Jacqui (jacqui) wrote,

Post Surgery Post, Thank Yous, Writing on Meds, Yesterday Was My Birthday, Yeay!

Hi Everyone, I just go back from my first real walk (they make us walk a lot in the hospital but just around the corridor, this was outside and for several blocks), and I am exhausted, dizzy, covered with sweat. All I want to do is lay down but I just had to come say hello, and thanks, and check up on some of my overlooked auctions.

I can't thank you enough for your love, support, calls, and flowers. You are the dearest people in the world! Thank you again and again for giving me the love and support I needed to get through, what was for me, a very scary ordeal.

{{{{{{{{{{{{{{{{{{{{ MY LIVE JOURNAL FRIENDS }}}}}}}}}}}}}}}}}}}}

My friend Mary, who is TOO MUCH OF A BIG DAMNED COWARD TO HAVE A JOURNALof her own, kindly listened to me babble on from the hospital journal I kept, and transcribed and posted some of it for me. Now is that a friend or what? I needed to know I was writing to you, documenting every little sugar pin prick, to keep my spirits up. It gave me a sense of purpose -- that maybe I could be thorough enough to help anyone coming up after me. Fill in some of those questions that had been unanswered when I had been out there looking.

I took pictures of everything. I don't know how or when I'll post them, but I will. I even got permission in advance from my surgeon and my anesthesiologist to be able to be totally conscious, (no little pre-surgery anti-anxiety iv cocktail for me), until seconds before the surgery, so I could take my little digital camera pal with me and shoot off a few pics of everyone in the operating room looking down at me. It surprised me that they said yes, and they were so cool about it all -- posing for pictures, cranking up the music and joking around with me, and then blam I was out.

I have a lot to transcribe from my journal about my hospital stay. I learned so much about hospitals, pain, recovery, the whole medical enchilada, (oh Lord do I wish I could have an enchilada), from the terrible shortage of nurses, to the real need for companionable care in the first few days when you are so helpless. I made mental lists of everything that could be done to make things better for future patients. I made friends with my neighbors because I'm just friendly that way, but more importantly because I couldn't bear to hear them crying out in pain or need. I would get up and go into their rooms when the nurses were ignoring them (I don't blame the nurses in any way, they are incredibly overworked, however I don't like how we all become just a random passing series of room numbers to them, I was 34, the last two digits of my room number), and helped them get things they couldn't reach, or shut off their damned iv bells.

I feel in love with the man in the room across the hallway from me, and I'm sad that I'll never see him again. It meant so much to make friends with him. It was the greatest honor when he got out of bed after almost dying (he was in so much pain every night, but he seemed to be improving and then they found him passed out on the floor with his lungs filled with fluid and he was totally incoherent for hours), and walked to my room to say hello. I had passed by his room twice that day and his wife had just very sadly waved me away. So I slunk off to my room, sat down on my bed, and was crying and writing about it in my journal when just a tiny while later I looked up and saw him WALKING!

He had his sweet wife by one side, his nurse Philip on the other, and his daughter near him, and everyone hugged and cried. We checked in at the same time so I just naturally felt like we were on the same team. We would have to ask the ever lurking Mary to tell us what exactly was being done to him, (she is the recovery goddess and knowledge queen of cancer), but he was having his second liver cancer operation, a graft of some kind. I am sending loving healing thoughts to him as I write this.

I was released from the hospital on Friday. I remember telling my doctor, who I love, (my doctor, my wonderful, brilliant, kind, amazing doctor, and his wonderful staff to whom every single one of those words also applies, were the absolute best and I would recommend them to anyone), that I would gladly talk to anyone who wants or needs a pal to walk through this process with them. I said that I would be able to tell people that, compared to how afraid I was, I just skated right through. He said, "Skated through? You've been the most serious case we've had so far. No one has had to stay in the hospital longer than you have. Your liver was enormous and we had to put in a drain." This of course made my little competitive inner horsey engine verrrry sad. I think I did so well, considering my liver was three times the normal size, and there was so much bleeding in a surgery that usually doesn't have any, that they had to insert a drain in order to be able to see.

Yes, there's nothing quite like the fun of asking your doctor if he wound up videotaping any of the procedure and hearing him say, "Well, yeah of course I did. You have the biggest fattest liver I've ever seen." Lovely, lovely, lovely. He didn't mean anything by it, he's really terrific, I swear, it's just that when it comes to medicine, he's all business. I actually think he's way up there in terms of sensitivity, especially when you consider what his priorities have to be, and he does have a lot of empathy for people struggling with weight and societies treatment of them. He told me that he's been collecting stories to write some kind of article. Pretty damned kind for a super busy surgeon.

I developed a nasty allergy to the tape they use to close your wounds. They're just these simple narrow clear strips of tape that make the whole thing look so well, neat and tidy. But I noticed something was starting to go wrong about three days post op when it started kind of burning and itching around the tape. I mentioned this to one of the other two doctors who sort of pop in to reassure themselves that you're still alive and kicking, but all he said was, "Hunh, you could be allergic to the tape, that looks like a blister there), and just left it at that.

No one else seemed to take any interest and frankly I didn't know what to do about it. There's this kind of, you shut up you stupid patient, mentality about hospitals and you find yourself, or well at least I did, wanting to please people just so they'll stick around and do the important things, like refilling your iv bags and administering pain shots.

I certainly wasn't going to mention it to one of the fly by nurses, so I told Dr. Liu the next time I saw him and he just looked at them and taped them back up again. He gave me a few packs of these tape strips and said covertly, "Here, hide these. Don't tell anyone I gave them to you or they'll charge you seventy dollars for them." I didn't really know what to make of that so I kind of hid them at the back of my tray. When the blisters seemed worse the next day I showed them to my wonderful nurse Christina (I'm serious, she is so lovely and kind and smart), when next I saw her. I said, "Umm, Chris, my tape keeps kind of oozing and melting off, what should I do about it?" So she retaped one of my wounds and then Doctor Liu came in, took her tape off, got some weird brown glue, and glued them back down.

I was released on Friday which was another comedy of errors but I'll spare you the story and maybe fill you in later because my wonderful, woozy, bliss-out-the-pain meds are just kicking in here, weeeeee. hey, you should try pouring juice from a big cup into a tiny little one ounce plastic cup when you're zonked out on Valium and Vicodin. Everything, and I mean everything around me is sticky.

Anyway, I came home and just collapsed for hours. It felt so good to be in my own bed. Then the panic set in. Poor God, (Goddess, Mother Earth, Beings of Light, the Universe, Aliens, Angels, Great Creator, Dolphins, whatever), I'm so ungrateful. One minute I'm just praying to live through this surgery, and the next minute I'm begging her/him for bagels and cream cheese. What have I done to myself? It's been seven days since I've eaten anything other than watered down juice. When will I ever be able to eat again? Please can't I just have a piece of cheese, anything?

Then the real itching started, my wounds and the tape felt hot and so itchy, and it took all my willpower, (and as we all know I have severely limited reserves of this stuff, I'm not even sure it exists), to keep from ripping off my hot bandages and scratching like a madwoman. It wasn't until yesterday morning, when I touched just the tape above my main wound, and it melted right off along with chunks of my skin that I realized we really do have a problem here. Long story medium-short, I called the pharmacist and got some advice, and have begun dressing my wounds and blisters with Telfa pads and hypoallergenic tape.

Yesterday was my first full day at home but I couldn't take any calls or see anyone because all I've done is sleep, get up, take meds, sleep, get up, drink liquid protein supplements, chew crushed ice, sip watered down juice, make little notes about how much I've taken in my binder, sleep, get up and redress my blistered wounds. It was also my birthday and Scott gave me lots of sweet gifts and cards and Irma made me a crushed ice cake with two candles. So sweet.

This little pig boy stole my cake.

I don't understand my stomach at all, mainly what I don't understand is how it should feel. I'm not getting any signals from it that I can recognize. It doesn't say, "Hey how ya doin' there, stop that fluid drinking okay? I'm feeling full here, yah, pretty full." Heh, who knew my tummy had a Minnesotan accent there, yah?

Well, as usual this has been a long one. Consider it my making up for lost time post. I'll get some pictures up and start transcribing my hospital notes as soon as I can. I don't have a clue if I've lost any weight or not because the only scale I have is mean and likes to play games with me so I'm starving it of my attention. I have to get a new one. I think I'll take a big hammer to the old one. It's that bad.

Love you guys.

PS: You know, I knew that I was a bit fearful, but I didn't know I was so afraid of dying. In some circumstances I can be so much braver than other people around me. I was always the girl on the horse who would chase down the lamer riders, grab their reigns, switch horses, walk them in, and save the day. I scuba dive with eels and sea snakes and sharks for fuck's sake. So it's just surprised me that I was this scared about all of this, every little step of it, but somehow made it through.

I just wish someone would tell me when I can stop worrying about staple ruptures, site leakages, dumping syndrome, bowel obstructions, blood clots and thromboses. I want to know for certain that this tender spot behind my knee isn't some kind of thickened blood clot that is just waiting to snake it's way up to my lungs and stop me from ever experiencing the many things I did all of this for. Oh well, my tiny plastic medicine cup is always half full so all I have to do is take in a deep breath of this jasmine scented night air and I'm better. All I have to do is look at the wild color of my troll's hair, touch a cat, watch Beau sleep, think about making love again, looking forward to my first bite of mashed potatos, and I'm fine again. God, I love being alive. Thank you, just thank you!

Six Feet Under on prescribed narcotics --- now that's bliss.

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