I walk to the industrial clothes dryer, open the door and crawl into it. Then, the monkey sitting on top pushes the buttons. On and off. Hot, warm, cool. He mixes it up. And I tumble round and round in the metal bin, bruising, trying to catch my breath. The monkey likes to mess with me. He enjoys it. It’s fun.
Friday night, I stepped off the bed and slipped in a puddle. Water? No. Zosyn. The nurse punctured the bag and it leaked out onto the floor.
Welcome to my weekend in the dryer.
Saturday gave me a CT scan of the gut. I was surprised I have any left.
My wife and daughter visited. I forget how I have to keep my head down to survive the week until they arrive on weekends. I felt better.
Sunday arrived with the news my appendix was dilated and ready to give birth to three stones. Time to come out, as that was why I had the flank pain, they thought. No food or liquids Sunday. And I went outside for the first time in six days.
My wife told me my daughter had cried last night and said, “daddy, doesn’t ever complain. I have such special parents.” She will be in for a surprise when she reads this blog years from now and says, “all my dad ever did was complain.” At least, I didn’t complain to her.
It’s funny our little nine year old noticed. And though I am convinced the experience of having a dad with CF will make her a stronger person with unique insight into life and its fragile, sandy nature, it will still have its pain for her. But in the end, she will be special for it, and appreciate every minute. That is the gift we will give her.
Sunday also gave me a defective mid-line. The nurse flushed it hard three times in the morning. I did not know you can flush a line that fast. But you can. And he did. Then the Meds started leaking out the bottom onto my dressing. A new cover and it started holding, until the night when it drained again. Out of order. No PICC line nurse on call. Time for a new shiny IV line to the hand.
Press tumble dry, on and off, 50 times, please, monkey.
If there was a highlight, the benadryl injection blasted my rocket into space and I am convinced they gave me some narcotic out of sympathy. 45 minutes of super buzz. I thanked the nurse over and over, and she couldn’t stop laughing at the stuff I said but don’t remember today.
My captive stand-up audience of one. The monkey clapped, too, then pressed “on.”
So, today was “exorcise the appendix” day. The surgeon came in, rubbed a chicken claw down my chest, and made love to my belly with his hands. He told me I didn’t need the surgery and left for Tahiti.
Stop the cycle. Bang, my head hits the metal ridge and the monkey snickers.
Jackpot, no surgery. Bummer, because I had watched the surgery on YouTube the night before and was looking forward to it. I could have done it myself.
Cut, cauterize, cut, snip, snag and bag. Extract the evil spirit.
Now comes the best part of my four-day dryer romp. Rejected for surgery with a dilated, three stone appendix, the monkey needed to inflict more pain. Making his monkey sounds, he spit into the dryer and voila, two blood clots in my right arm, one svt and one dvt. Damn, good one.
Now last week, when I received the midline, I asked them to use heparin to flush the lines. They do for a PICC, but balked at the midline for reasons I am still unclear about. Something about bleeding, which makes no sense, as I flushed it with heparin in November six or seven times a day. No bleeding.
But there is debate about the DVT and its age. Of course there is.
Does the monkey just make up its own story as needed?
I met with vascular surgery. Too risky to extract. Hello, heparin. Then back to the Lovenox shots to the gut, which I did a year of, and sent me to the sink coughing up huge amounts of blood. Looking forward to that joy again.
I wish I had a happy ending to this post – something special if you’ve read this far. But I don’t.
I do, however, know this: the hospital is a living breathing life form. A spirit. I can feel its presence. It moves, expands, contracts. I have spoken to it at night, in the quiet dark. I understand its language, its innocence.
It loves me, and says, “you will never leave me again. We were meant to be together, forever.”
Last night I watched a National Geographic show where Mongolian tribes took a baby eagle from her nest and raised her to hunt foxes. When they showed the eagle hunting the fox. I began to worry about you. There were also monkeys that came in hordes and ate the grain they lived off of, but they couldn’t kill the monkeys because they were on protected land. The show made me think of you, and then you wrote this. So now I probably sound like a creep, but there you have it. Incidentally, our daughters are the same age.
I read your post. It was like watching a car crash. sometimes in life there is nothing to say. That sometimes is often on this blog. If knowing you have friends you have never met helps, then here i am.
Damn blood clots, Lauren had one attached to her old port and helped it to stop working. They managed to get it out when they took the port out. Very strange about them not wanting to use Heparin? We have always been told to use it and always have without any problems.
I hope that monkey stops putting you through the mixer soon and you bust out of the klink.
Fcuk man, sorry to hear of such a tuff go. But on some good news I just asked my girlfriend to marry me and she said “Yes”. I hope that good news puts a smile on Your face.
Sorry for the delayed reply. I did enjoy hearing the good news while I was locked up. Congratulations. I wish you and your future wife many happy years together. I am very excited for the two of you.
IIIIIII LOOOOOOVVVVEEEEE YOOOOOOUUUUUUUU my west coast friend!!!!!!
I would love to have something witty and smart to say…..alas, I am out of words…..a rare and scary occurence.
Take the SVT, throw the DVT in the garbage. Tell the monkey to go the fuck away and come to La so you can have someone flush a line without blowing it out…….
Sorry about the hand thing, and the heparin thing, and the lovenox thing….the secret to lovenox is the air bubble and the placement…..make sure they do it right……
Dont make me come to the west coast to kick some ass…..i’d do it too….not yours, theirs.
Hold on to your California girls…..what lovely ladies you have. Hang tight.
All of my best love. light. and energy headed your way through the abyss…..~j
My favorite mental image of this post is “The surgeon came in, rubbed a chicken claw down my chest, and made love to my belly with his hands.” I think the surgeon would love to know that his belly rubs were equivalent to a one-night stand.
So glad your wife and daughter were able to visit…they are the reason you continue to endure the dryer. And yes, I agree that it will be a gift in the long-run to your lovely nine-year-old to have learned the beauty and transience of this life as well as a deep compassion. Don’t get me wrong though – you know I wish our daughters never had heard of CF much less had to watch their fathers suffer.
Thinking of you daily.
Love and hugs,
p.s. Chris can only get mid-lines nowadays due to clots in his central veins, so we always hang a prominent sign on his IV line stating “HEPARIN FLUSHES ARE MANDATORY PER VASCULAR DR. _____”. Even if you make up a dr name, it seems to help the heparin battle.
Dang, as we say in Texas. What a sucky week for you! Give us your address if you want gifts and cards. Seriously. Remembering you every day, UC.
Hope you are starting to feel better. So glad you didn’t get on that plane to Jersey.
I so enjoy your posts – both the raw truthful ones and the funny ones. I check everyday for new ones. Speaking of Monkeys – look for “trunk monkeys” I guess on you tube – it is so funny. Prayers for improved health for you