My Unexpected Adventure with a Brain Tumor–Part 8 (Surgery Day and the ICU)

The morning of:

I was already packed up and prepared the night before.  (See my packing list at the end of this post.)   I wasn’t allowed to eat or drink after midnight the night before, so I showered, avoided breakfast, put on warm, cozy clothes, kissed my sweet kids good-bye as they continued sleeping, and my husband and I headed out into the dark morning for our 1-hour drive to Stanford.   I grabbed my headphones and meditation CDs and spent the whole drive with my eyes closed, trying to just listen and be calm and cozy.   The CD ended right when we pulled into the hospital parking garage.

I knew in advance that I wanted to limit the number of formal visits and “good-byes” I had to go through the morning of surgery.  I just needed to focus on not having an emotional breakdown, and I thought that if there were any distractions at all I would probably lose it.  I was in a fragile state for sure.  I had managed to down-play what I was about to go through, and tried to imagine that I was just having something minor done, like getting a crown at the dentist.  (Who needs formal good-byes for that, right?)  I was definitely anxious, but talking myself out of needing to be.

We checked into the admitting area outside the operating room, and because I was already pre-registered from my last pre-op visit, the process was pretty quick.  They gave me a hospital wristband for each wrist, and instructed us to just sit down and wait until I was called to the pre-op area.  I was told that there would be one other opportunity to have family come in to the pre-op area before surgery started, but I opted out, and just told my husband that he could go along with my “This-is-no-big-deal, just-like-a-dentist-appointment, and-I’ll see-you-later-plan.”   He was ok with that, and soon afterwards I heard my name called and gave him my quick, casual “see you later” kiss…

Monday morning in pre-op was a pretty bustling scene.  One nurse took me back and had me head to the bathroom to change into my hospital gown and pee into a cup.  Even though it was totally out of my comfort zone, I decided to leave no stone unturned with regards to my recovery, so I went ahead and taped the affirmations page from the Huddleston book to the front of my gown.  They gave me a paper bag with my name and bed number on it, so I carried my clothes in that and was directed to bed #5.  (I had no other belongings or jewelry, and I left my phone with my husband.)  A friendly nurse soon came over and took my vitals, asked me lots of questions, and put an adhesive pad on my tailbone, saying that it may get sore without it.)  I asked her if she was familiar with patients requesting that affirmations be said when they’re “under,” and she said that yes, she had seen a few.  She recommended that I add, “You will wake up with no nausea,” and to ask the anesthesiologist to read them to me.  She left, and eventually an anesthesiologist came in to set me up with an IV in my hand.  I asked him about the affirmations and while he was nice,  he was a little less warm and fuzzy, and it was clear that he was not that in to doing it.  He basically said, “Sure, but I have to tell you about all the risks that go along with this too,”  so that kind of offset the notion that I would be left with positive thoughts just before I went under.  Not long after, I remember starting to feel a tiny bit more relaxed from whatever was flowing through the IV.  The ENT surgeon, Dr. Blevins, came by to check in and ask if I was ready.  Soon after, another doctor I didn’t know came by to verify the surgery site and to draw a line where the incision would be made around my ear. (Because Stanford is a teaching hospital, there are all levels of doctors and doctors-to-be you’ve never met, passing by and checking in.)

I spent all of my quiet moments trying to imagine myself on my yellow raft in Croatia (see my previous post), and trying to feel all the positive and peaceful energy being sent my way from my circle of dear friends and family just waking up.  I will admit that it was hard to stay focused in the bustling pre-op area.  And it was hard to still pretend that I was just getting a dental crown.  I remembered to breathe deeply, but I know my heart was racing.

After a fair amount of waiting and trying desperately to remain floating in my safe, peaceful raft circle, the anesthesiologist came back with my surgery cap, and he and another nurse wheeled me and my bed back to the operating room.  I had become a little bit obsessive about the dang affirmations, probably because I was out of my comfort zone in the first place, then got a mixed reaction and felt extra vulnerable because of it. Unfortunately, rather than adding to my comfort, I think they actually made me more anxious.   I have no memory of having them read to me before I went under, but I think I would have been too loopy to remember anyway.  My last pre-op memory was in the operating room, looking around at a sea of smiling people in scrubs around my bed, saying, “Are you ready?” and I said, “I think so.”  Then one male nurse next to me added, ” Would you like something to help you relax?,” and I half-laughed and said “yes” to that too.

While I was “under”:

My husband, mom and step-dad were in the waiting room the entire LONG day.  They started the morning with a room full of people, and throughout the day everyone else was finishing up their surgeries and heading home.  My family was being notified periodically with all positive updates, and my husband took notes on his phone with the timing and news of each.  The surgery was scheduled to start at 8:00 AM and wrap up around 6:00 PM, but they reached 7:00 and 8:00 and 9:00 PM, and they still weren’t finished.   As my family was getting more anxious they tried to get more updates, but they weren’t able to get any.  FINALLY at about 10:30 PM the surgeon came out and said they were done, and that everything went well, but it was a particularly difficult surgery.  The tumor was at a tricky angle and quite stuck to the brain stem and facial nerve, so he said, “We really had to work for it on this one.”  (They also started late, so that’s partly why it went late, but overall, my surgery was about 14 hours long!)  They said that they stimulated my facial nerve to try to see where it was and protect it from damage, and that it gave excellent feedback for about 10 hours, but then its activity started to fade, so they called it done at that point, in an effort to save it.  Some of the tumor was intentionally left on the facial nerve, and they don’t expect that it will grow back with the bulk of the tumor now gone, but if it does, then they will radiate it.  My husband used my phone to post a long-awaited update on my Facebook page.  Friends and family were very grateful to get some news, and all throughout the day (I discovered later), were sending thoughtful messages my way and posting pictures of yellow rafts on my page.  (I didn’t see them until later, of course, but when I did it warmed my heart and made me cry.)

Waking up:

The details are fuzzy from my first post-op hours, and coming out of anesthesia was surreal.  I had been told that the breathing tube they were putting in for surgery would be out before I woke up, so when I woke up with it still in place, unable to talk, I felt somewhat panicky.   My field of vision looked reminiscent of a Picasso painting, and all things normally vertical were horizontal.   I remember being groggy and trying to communicate that I wanted the uncomfortable breathing tube out, but the anesthesiologist wanted to leave it until the next morning.  I think I was imagining a CSF leak as I thought I felt something drip out of my nose, and tried to communicate that too, but there wasn’t one.  My mom and step-dad went back to their nearby rented Air BnB, and my husband slept in a sleeping bag on the waiting room floor.   I think I was in and out of sleeping through the next 12 hours or so, feeling generally comfortable, aside from the breathing tube, and feeling kind of relieved to have survived, but also anxious about the state I was in.   I remember hearing conversations that the nurses were having, and my mind was in a sort of wild/racing/dazed state.  I think that one nurse (who I liked and the same one who offered me the relaxation cocktail just before I went under) was talking to (who I assume was) the anesthesiologist about how they should read the affirmations soon, since I was waking up more and more, and the anesthesiologist was saying that he didn’t want to do it.  The nurse was saying, “…but it’s the patient’s wishes; we have to do it,” and the other guy was basically saying something about how he felt like it gave false hope and was kind of a liability.   Every time the second guy said “no,” I could feel anxiety rising and hear my heart monitor beeping in alarm, and I heard the nurse say, “See?  She can hear you.”  I had also heard them talking about my having had tachycardia that night, which  I didn’t know much about, but I knew it had to do with my heart rate, but I’ve never had it before in my life.  After a bit of back and forth arguing about it and a few rounds of my emergency-sounding heart monitor alarms, the lovable nurse came over and read them to me by himself anyway.  Now, for a few weeks I thought that I might have made all of this up, but when I talked to my husband later, he said the nurses told him that I had been having tachycardia.  So, THAT I definitely did not make up, which makes me wonder if I really made up the rest too.   It was certainly an elaborate and pertinent story to make up if I did.   I guess I’ll never really know.   It’s fascinating that I got so obsessed about the affirmations/healing statements, like I was clinging to them as my last little ray of hope in this scary situation, and I wasn’t going to let someone take it away… so even without the ability to talk or move, and barely being conscious, I managed to advocate for myself via my heart rate monitor?   That’s kind of cool.    If all of that really happened as I tell it,  I’m so grateful for that nurse’s dedication to patient comfort and care.  I also remember that he put ice packs all over me when I started to get a low-grade fever, and he came and held my hand to say good-bye when his shift ended too.  I’m pretty sure none of that was made up.  I was sorry to see him go.  This whole affirmations idea was the ONE thing I initially thought I’d opt OUT of doing because it just didn’t feel like “me,” so it’s funny how I ended up getting totally fixated on it on the battlefield.  I think if I had met the anesthesiologist days before the surgery, which the book recommended doing, it all might have unfolded differently.  Maybe I wouldn’t have even brought up the topic.  I wonder what would have been going through my mind instead in the ICU, if that was the case?

By early morning, a different anesthesiologist came back in to remove the breathing tube.  (I believe there were two there during surgery, so this was one I hadn’t met before.)  He said “I’m going to inflate this balloon-like thing in your throat” and then I gagged and sort of threw up on him.  Then finally the damn thing slid out and I was free!!!!!  My throat felt really raw and it was kind of hard to talk at first, and I think my voice was a little raspy for awhile.   I noticed pretty quickly that I couldn’t swallow my own spit, and I had to get a nurse to come over and suction it out every once in awhile.  When my family was able to visit, the first thing I said to my mom was, “I think you should know that you’re horizontal.”  (Yes, all people and the curtain surrounding my bed were parallel to the floor, as far as I could tell, and my view of the nurses’ station remained reminiscent of a Picasso painting.)

Later in the day an occupational therapist came by to see how I could manage eating and drinking.  (There’s a fair amount of concern about people aspirating when they can’t swallow correctly.)  The  nurse got me some yogurt and applesauce from the cafeteria, and I managed to eat a little bit of that, but it definitely wanted to dribble out of my mouth.  My husband brought a healthy homemade orange jello and green juice from home, and both of those hit the spot for my sore throat.  From this point on I had to drink through a straw, but also had to use my fingers to squeeze my lips together to make a seal around the straw to actually make it work.  The next food I tried was pureed broccoli and carrots, which worked out ok, but I needed to wash down every bite to be able to effectively swallow it.

My surgeons came by to check in and sincerely explained how it was a particularly challenging surgery.  They felt that it was successful, however,  and were both confident that the facial nerve was still anatomically intact.  However, with all that it had been through during such a long surgery, they expected that the left side of my face would be paralyzed for months while it healed.  (For some people they have a sense that it will be days-to-weeks, but in my case, they knew it would be months.)  I hadn’t actually seen myself in the mirror yet, but I suspected I wasn’t going to love my new look, and was a little too “worked over” to be overly worried right then anyway.

I believe that was all that I have to report from my memories of the ICU.  My nurses were fantastic.  Overall, I felt very well-cared for there, and was lucky to get some extra time because my next room wasn’t available as early as expected.

IMG_8913

Looking a little “worked over” after surgery.

My own hospital packing list: 

(My husband kept my bag in the car until I was out of the ICU, and then brought it to me to have next to my bed the rest of the stay.  Before I went into surgery I gave him my phone, ID, insurance card and medication card to hold for me, so that I didn’t have anything but the clothes I was wearing when I headed into Pre-Op.)

  • ID
  • Insurance Card
  • Medication card (the hospital gave me one to fill out at my last appointment.)
  • My meditation CDs, CD player, headphones and batteries (I only ended up using it in the car on the way there.)
  • Phone, portable battery pack and cords (I appreciated having this to take photos, text my family, entertain myself and post my own Facebook updates.  My vision was kooky though, so I couldn’t read very well.  Typing on it was somewhat slow and challenging too, but I managed every once in awhile.)
  • My affirmations page from the Huddleston book and a piece of tape (I taped it to my gown once I was in my pre-op bed.)
  • Journal/notepad or pen/pencil (I never used it, but should have tried, for taking notes or writing down questions.)
  • Book (I never used it.)
  • A fresh set of comfy jammies/clothes  (I did spend my last day in my own jammies, which was nice.)
  • Slippers (I didn’t need them.  They provided non-slip socks.)
  • Hair brush  (I didn’t use it, but my hair was a total rat’s nest by the time I left.)
  • Dental care stuff (I didn’t use it.)
  • Face-care stuff (I didn’t use it.)
  • Baby wipes, or something similar.  (Showers and sponge baths weren’t happening, so if you want to freshen your body up, you might want some.  I didn’t have any, and also just accepted that I was in a gross state in every possible way anyway, so I didn’t worry about it.  You never know how long your stay will be though, so it’s worth packing some in case you’re there longer than expected, and are tired of feeling grimy.)
  • Warm coat in case it’s cold when you leave the hospital.
  • Sunglasses and a cap for the drive home, in case it’s bright out. (I didn’t have these, but wished I had.)
  • All jewelry was left at home (even my wedding ring).
  • I left my contacts at home too.  If I had had glasses I might have brought them, but I’m not sure if it would have made a difference with my kooky vision problems anyway.  I couldn’t really watch TV, so I didn’t need them at the hospital.

 

With regards to the affirmations/healing statements page that I got so fixated on, this is the template that came out of the Huddleston book, and what the pre-op nurse recommended that I add at the end.  Though this idea made me a crazy lady for awhile while I was fixated on it and out of my comfort zone, I’m glad I advocated for myself in the end.  I can honestly say that I did EVERYTHING I could to give myself the best chances of a smooth procedure and recovery.

As I am going under anesthesia, please say:  

#1 “Following the operation, you will feel comfortable and you will heal very well.”  (Repeat 5 times.)
Towards the end of surgery, please say:

#2 “Your surgery has gone very well.”  (Repeat 5 times)

#3 “Following this operation, you will be hungry for _____________________.  You will be thirsty and you will urinate easily.”  (Repeat 5 times.)

#4 “Following this operation, you will have no nausea.   (Repeat 5 times.)

 

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