Home. Oh wow. The breeze. just being able to be. Nothing like even a shortest of hospital stays to help you appreciate the creature comforts of home.
I have a dear friend whose son is one of the toughest fighters I've ever known. They have lived at the hospital for months and months and can no more than get home for a brief respite- to be back in the fray. I can't imagine. When Lily was sick- Phil did night duty because I just couldn't handle it. He was more assertive in creating a sleep environment. We had friends who could not leave. We would be discharged and come back to our friend Elika and her beautiful mom and sisters, engaging in some craft or school- because when you live in the hospital you try to live and if you are there- that is the safest place for you at the time.
I did just have brain surgery and I am very lucky. I do not take this for granted and think of my so many friends who are fighting and negotiating the tricky health waters right now. Waiting for scan results, biopsy results, wondering if that ache is the next cancer. Despite signs, offering board games- if you are "bored"- I have yet to feel that. Bored? What is this bored?
We will hear when we hear about what exactly the tumor is/was. Then there will be thoughtful processing and a plan. No matter what it is, the biggest hope is that my surgeon got all of it or as much as humanly possible as radiation didn't work the best there for me and chemos can be hit or miss. We wait and we see. My surgeon was absolutely amazing. He had some pretty good references- I know many of you might not know I have a pretty impressive network of brother in laws- one of which knows a thing or two about brains. I remember when he said he was going into neurosurgery- a bit of a relief and a a great big hope I'd never have to pick his brain. Luck, karma, whatever, here we are. Brains picked.
I don't feel like I just had someone poking around in my head. Which is unsettling for how much I worried about the end all be all organ that makes me, me. It is literally a mind F$#@!. There is the worry you feel when your child is sick. When your entire being is laying there beside you you- your heart, soul, breathing, fighting, completely outside of you. The hours I laid next to Phillip and Lily, praying, pleading to be able to do something, anything to fix them, to help them, to make them better. Let it be me. You would do anything to trade places with them, to ease their pain. But whether it's being left out of a party, or coping with physical illness- so many times there is nothing we can do but just be there and the burdens we carry when we can't ease the pain never quite go away- even when the little shits prove everyone wrong and start tap dancing on your last nerve or do things that make you yell- knock that off I've worked too damn hard to keep you alive.
The mysterious brain. We sat in our preop appointment a couple days before surgery and the surgeon let us know if the tumor shrank at all he would consider calling off the surgery. I like to plan, I used to be a big planner- it's taken a lot of work to try to be more flexible. THIS was not even an option, but wasn't it me who kept saying if it's not good, let's not. SO after feeling completely validated and upended all at the same time- I went into the STealth MRI- still hoping for shrinkage(not something any of the male sorts will get) but knowing that an infiltrated contrast and many factors could topple the stack of cards of care and recovering I had come to terms with. Those extra 2 days- delay had gotten me to the point I was ready to get it over with- but stress has that effect- sometimes the fear can mess with the plan. I did feel like our surgeon really heard me- I had no symptoms going into it really and the risks are big. I want to do everything I can to be here, but me. Quirky off balance, me is ok( I can say that NOW).
We talked actual operation, he showed us the small titanium plates that would cover holes in bones. I asked specifics about positioning. One of those things you learn after surgeries- the muscle aches and pains from how you are positioned for the prolonged period during surgery often are worse than the actual incisions. With the tumor being in my cerebellum, not particularly close to the surface- would require neck tweaking- full body wrappign(YOU DO NOT WANT ANY MOVEMENT when someone has a sharp object up in your noggin. ) as well as a headcage which would leave a few drill holes. He promised to take care with the shaving of the hair. I could give 2 F$#@!s about the hair. If at that point he wanted to shave the whole thing and it could help the surgery and recovery in anyway- go for it! Scar- do what you gotta do- I'm earning this bad boy- I won't see it- do what you gotta do. It's pretty bad ass if I say so. Lily says it's 21 stitches. Bella was so worried someone might make fun of it. What kind of ass would make fun of pain- no one in our circle babe-she hugged me yesterday- I almost forgot you had surgery you look normal again. Oh my heart.
I didn't feel confident going into surgery, but I was at peace and confident in my surgeon, the team and that this needed to be done. The outcome could have gone so many ways. The mysterious wonderful brain. I have zero memory of being wheeled into the OR. Doc warned me I would only be allowed tylenol and a mild muscle relaxant after so they could monitor all function. That was one of the things that terrified me the most. The fear of the pain and dizziness and knowing not much would be done about it, even though I understood why. I promised him I was a talker on meds- and if he gave me good stuff I'd tell him whatever he wanted to know. I would be the world's worst POW. Unfortunately my lungs also get a little sleepy with anesthesia- so the whole watching those oxygen levels becomes a big priority and well- less leeway with the other fun stuff. Apparently I was very very chatty. Who knows what secrets have been spilled. mwah ha ha.
And well coming out of anesthesia is always a trip. I have many many angels looking out for me and have been sedated a bunch. I always wake up feeling a profound loss that these drug induced alterconscious times weren't all hollywood realm gather with the angels as they walk you away from the light sort of events. And I do get post anesthesia weepies. It is a depressant. duh. I am confident I was not alone this time in any stretch. It was also fun to joke that my dad and Bob were standing there with us as I came out-Planned that one for weeks- hindsight- brain tumor patients should be careful about calling out fake hallucinations of the beyond- but then again everyone blames it on the anesthesia.
|Boobie toomah/cyst before surgery.|
The post surgery MRI was my least favorite event- but in grand scheme not a huge deal. I wasn't dizzy(pretty much didn't open my eyes to check- but the kind of dizzy I worried about was the earth shattering spinning kind that no amount of closed eyes help) My pain was a 5-6. I was expecting 9 and puking(no puking!). I realize people have very different pain scales and tolerances(I'll be the first to tell you I'm a total wimp when it comes to pain) but the pain scale is pretty clear and emoticon wise- I really figured when they open up your head in any way- you would be totally grimace face tears, can't concentrate puking face. I was not.
|Post surgery- bye bye boobie toomah.|
Due to years of chemo- my veins are sad. There was lots of discussion preop about central lines and options to keep me safe and accessed. We had my port accessed, but even then- certain veins and catheters are better for different uses. I ended up with a femoral catheter(right in the groin- left side not right- TMI?) since my arms and chest are a bit messy. They flush ports with saline and heparin- so they don't clot- some people taste it(it's a weird metal salty tingly effervescent ick in the back of your throat- people get really put out about it. Lily would dread it. I taste it- but it's fleeting and no sense in ruining the taste of a good piece of candy trying to hide the taste- so I just let it pass. It's one thing when they flush a port in your chest which is close to your throat and you taste it- it's a bit unsettling when they flush a cath in your groin and you taste it. bizarroland experience.
So they wheel me to MRI. I am claustrophobic- It is an LFS stress acquired condition - the constant cumulative threat of cancers and what these amazing loud tubes of magnets will uncover inside - lends to thoughtful head clunking- what ifs. Post surgery- well we are just hope hope hoping for good margins, no swelling or bleeds. I was loopy but very anxious. I still had all the heart monitor electrodes attached and my nurse asked if I wanted to peel them off or should he. OH I can do it- not wanting to be a bother- I have ECHOS all the time- sometimes I forget about one or 2 and you find it later with it's bonus adhesive hiding under uniboob. As cute as young male army nurse is, I have enough wits about me to know I don't want him flopping uniboob around in the middle of MRI land. So I start flicking off electrodes and at some point grabbed and deaccessed my port- the port that was our important back up and specially marked with how much contrast and how fast to push it for the MRI.....Yep that happened. And there are only a select few who can reaccess a port and in the middle of the night in MRI- they aren't hovering. Jen bought herself another vein dig. sweet. could be worse. We could have to shove a newly operated on nugget into a headcage then slide into a loud clanging tube. Oh check. That's why we are here. commence anxiety and difficulty breathing- oh wait I have oxygen on- I am breathing. cool. air. so dry. hummmmm. hummmmm. bang bang. schwiiiiiing. After all the talk and prep about non stress and calm- spa tripler delivers again. But I'll take it over pain dizzy and puking- perspective.
That being said- The ICU at Tripler- one of the few departments we had not visited- was really nice. Nice to the point when asked if I knew where I was I hesitated- used to the standard rooms that haven't been updated since 1958- this didn't LOOK like Tripler at all. Then there is is the really mean question- what day is it? People. Do not sedate someone and expect them to remain in the right time space continuum but also- unless I have a child present to tell me which after school activity we are late for- odds are I don't know what day it is. Next question. Month- got that- February. How about who is the President- well now that is just plain old mean and cruel.
I had really really wonderful care. The perfect balance of telling me what was needed versus what I needed(sleep anyone?) stop the incessant beeping. I know many are often concerned about the care at a military treatment facility and again I must say our experience is very very good. There are the standard glitches and problems- life, shit happens( another blog- space age toilet and whatnot) but we have been lucky enough to encounter some of THE finest, most compassionate, dedicated health care professionals at TAMC. We do tend to latch on a bit. ICU had a view tourists would pay to have brain surgery for. I spent 2 nights in ICU-more so because it was relatively comfy-(right?!?- who knew) than a huge problem that needed to be addressed-except that little bit about just having brain surgery and needing monitoring thing. BUT as in all good things in life and brain surgery- that too must end. We ventured down to the new PCU - Progressive Care Unit. Because you have to step down to get -HOME. A step down from ICU and view - but a step up in independence - rooms newly renovated and very good care. It wasn't until later that the familiarity of the room itself hit me. Where I was used to be the Pediatric Sedation Center and PICU- a place we spent some quality time with Phillip, Lily and the annual kid MRI screens. The kids came to visit- even Kiera who often would rather scrub her hands off than spend time in the hospital.
|a sweet valentine!|
My surgeon checked in bright and early and I aimed to be a great patient. I am not stronger, tougher or any better at this than anyone. Luck. My scar was healing well- pain was being managed and I was absolutely floored that I didn't feel dizzy, nauseous or that any sort pain that I had been expecting. I don't defy expectations- the situation did. Luck. Expert care. Tons and tons of good vibes, prayers and love. I did mention that I've had worse colds and headaches from just dealing with kids- I do not in any way want to minimalize what happens or brain surgery. If one's stress level before procedure is proportional to the positivity of outcome- I could explain it away and say I rocked it- but I can not take credit. I do not want to diminish the network of care and professionals who came together to ensure this outcome. They don't do it just for me, they do it every day. I am grateful.
I struggle with "making it look easy". None of it is or has been. Sometimes seeing others smiling through treatment can be downright demoralizing while you are in the thick of it. I see pictures of kids in treatment online- "reminders" it is not sunshiney, fun or easy because when you are in the dumps it is tough to crawl out. It's a tough balance- the realism, the difficulty, and taking the breaks when you get them. I know how difficult a surgery like what I had has been on many friends and has left long term, hard side effects. I don't want to in any way take from the hard work and pain they've endured through recovery.
So I rest still and stay unplugged-ish. I appreciate the time with my family. I itch the bits that are healing gently- the kids are helping plan a hair trim to even out the shaved area- Phil is knocking out projects all over the place. Grandma and Monica are spoiling the kids with treats and projects and we've started short visits with friends and appreciate the sweet treats and love we are getting.
I stick to tylenol during the day and my back is a more reliable weather indicator than Guy Hagi(local weatherman). At night I take a little more for pain and seem to have a bit of a middle of the night medication supported Amazon shopping problem. If I disappear online- Phil may have enabled parental restrictions on me to protect any sort of future retirement financial goal- but today I got the most lovely solar butterfly/dragonfly lights package! And I've been making some good headway on the girls' birthday presents...Now to walk to the corner!