Ok. This is a long overdue post. Two days after my surgery, while I was still in the hospital, I spent two hours writing out all the juicy details involving my experience before and after the surgery. I had some amazing care from my nurses and wanted to make sure that I wrote it all down before I forgot all the details or their names. I was almost done writing this huge post when my husband showed up to visit and then I pushed "discard" instead of "save" on my damn iPod.
Anyway, since then I have been avoiding writing a blog entry because I don't want to rewrite that long one again. Now that I have procrastinated so long I am sure that I will leave out details which is probably a good thing because the original entry would have been considered too graphic for some of you. So... Eleven days after surgery... This is what I remember.
THE NIGHT BEFORE
My mom slept over the night before so that someone would be home with Gracie when my husband and I left early on the morning of the surgery. I had a little melt down that night right after I went to bed (after kissing a sleeping Gracie goodnight) because I hadn't spoken to her about the fact that I was leaving for the hospital in the morning. In the end, I decided not to tell her anymore information because she seemed to get stressed out about me leaving so I thought I would keep it light. I know that this was the right thing to do, but I felt so guilty and was thinking "what if I don't wake up and this is the last time I see her". I ended up crying with my mom and Kevin. Then I decided to snuggle in bed with Gracie for 20 minutes... which calmed me down... and then I promptly fell asleep in Gracie's bed.
MORNING OF THE SURGERY
I woke up early!! Crawled out of Gracie's bed :) I had to be at the hospital at around 6:30 in the morning. I couldn't eat anything but I was allowed to have 2 cups of clear fluids 90 minutes before my arrival time. I got up at 5:00 and had a glass of white grape juice. I had to wash my hair and scalp with a disinfecting soap and I couldn't brush/comb it afterwards. I dragged my fingers through my hair. Got dressed and hugged my mom goodbye. She had always been reassuring me that she was totally confident that everything was going to be fine. The hug she gave me made me think otherwise. We had an emotional hug goodbye and then Kevin and I left.
ARRIVAL AT THE HOSPITAL
We got to the hospital on time and checked in at the pre-op desk. They had me change into a gown right away and then Kevin and I were brought to a waiting room. The waiting room was full except for three chairs. One chair was next to a very old man in a gown who was obviously frail and there for surgery too. The other two chairs were separated by a guy (about my age) who was not a patient and was treating the woman he came with (who was there for surgery really crappy... he wasn't talking or sitting with her). I sat down in one of the chairs and Kevin opted to sit on the arm of my chair so that we could sit together. Because (SHOCKER) the young guy didn't offer to move over a chair even after Kevin sat on my chair. At this point the old man offered for us to move his extra chair over by mine. Thank you!
I was then called into the pre-op holding room. Where the nurse had me lay down on a bed. I don't remember a lot of this part anymore but I had all my vitals checked and we talked to the nurse about Gracie. She asked if we had a picture and Kevin pulled out his iPhone and showed her a picture of a baby monkey that he likes to say is Gracie. the nurse laughed and said "She has your eyes" and then we laughed and then he showed her a real picture of Gracie.
At around 8:00 a porter came down to wheel me in my bed to the OR floor. Kevin was allowed to walk with us but he had to kiss me goodbye outside the entrance to the OR hallway.
JUST BEFORE SURGERY
This is the part I was dreading. The part where I get left in the hallway by myself. When I had a surgery two years ago this was the part that was the most difficult. There were no pleasant surprises here. Having to wait by yourself in a bed parked in the hallway outside the OR where you are going to have your head cut open in a matter of minutes is no fun. I thought of my family a lot but I had to force myself not to think of Gracie because whenever I did I would start crying... and I didn't have any Kleenex. I waited for about 20 minutes. Then my OR nurse came out to talk to me. Irene. She was sweet but serious. She was great. Then I was wheeled into the OR and moved to the operating table. I was hooked up to a lot of machines and introduced to the team. There were at least 6 people in the room. I joked with my surgeon for a minute and the anesthesiologist explained what he would be doing. I got upset around his point (I stupidly started thinking of Gracie) and Irene was there with tissue dabbing my eyes and calming me down. The anesthesiologist said some nice things here. He said that he recommends that patients think about somewhere they would like to be (like on a vacation) and the people they would like to be there with. He said some people will then fall asleep and dream about that place. I decided that I wanted to go to Bora Bora with Kevin and Gracie and at the last second I decided to bring Weifun with me too (thanks Frederic). I then had the mask put over my face and I took the deepest breaths I could so that I could go under as quickly as possible so that the worst part could be over!
PACU / RECOVERY
I didn't dream. Next thing I know I have Irene talking to me. I'm still in the OR. "Daiva. Daiva."
Me: "I'm alive!"
Irene (laughing): "The surgery is over. It was very successful and the doctor got the tumor out in one piece."
Me: "I'm alive! Thank you so much!"
The feeling I have just before surgery is the worst possible fear and sadness but this all changes when I wake up. I woke up FLOATING (and not just from the drugs). Floating from happiness and relief. I wanted to pinch myself to make sure it was real. I was under for around 5 hours but it felt like I went from such a sad place to a happy one in just seconds.
Then I got wheeled to PACU (post anesthetic care unit - aka recovery room). Irene squeezed my hand or I squeezed hers (I don't know), I thanked her again and I said goodbye to her. My new nurse is Cathy. She's wonderful. I have a Neuro test done.
Cathy: hi Daiva. Can you talk?
Me: I'm alive! Do you spell Cathy with a C or a K?
Cathy laughs and proceeds to ask me a bunch of questions which I'm very happy to notice that Cathy likes my answers to. Cathy asked me what number out of ten my pain was. Seven. She gives me something for pain. I complain a few minutes later. She gives me more. I complain again a few minutes later. She gives me something more. Cathy and I are talking when my surgeon comes in and does another Neuro test. Tells me that the surgery was a huge success and asked me if Kevin is waiting for a call. I say yes and he goes off to call Kevin. I found out later that when the doctor calls Kevin the doctor told him that everything went well but Kevin kept waiting for him to say "but". There was a long silence on the phone while Kevin waited and finally the doctor said "Kevin?" The surgery was a success and Daiva is talking... A lot!"
Kevin replied "That sounds like Daiva."
I was in the PACU room from around 1:30 to 7:30. In that time Cathy had another nurse join her. Andrea. I complained about pain and was given stronger drugs. Codeine. I also started to feel quite nauseous during this time and Andrea would hold my hand and look into my eyes during all the tough moments. Andrea and Cathy not only made me feel well looked after but they also made me feel loved. They were really fantastic!!!! I also heard them telling the nurses how great I was :) so I guess we were all really getting along well.
I slept a lot while in PACU because of the codeine. I think I talked to Kevin on the phone. Maybe even my mom.
NOA (Neurological Observation Area)
In the evening a bed opened up in NOA which is like PACU but is specifically for Neurological recovery. Andrea came with me to transport me to the new area. We passed a window in the hallway and I got to see my reflection. I was shocked! I expected to see my head covered in bandages but there were none. I then expected to see the side of my head shaved. Nope! I had a thin strip of my hair shaved where they had to make the incision. The thin line starts at the top of my head and then works it way down to my ear. It's like if I had a headband on my head (but only on one side). I still have all the hair at the font of my head so once my staples come out (all TWENTY ONE) I can hide the missing hair by pulling my front hair back and putting it all up in a ponytail. Yay! I was so happy. Andrea thought it looked great too!
When we got outside the NOA doors I saw Kevin waiting. He had his back to us. I said "Hi Kevin!" and I think he was pretty shocked to see and hear that I was doing so well. Andrea got me settled into my new bed and gave a report to my new nurse, Debbie, and nursing student, Earl. I had a sad goodbye moment with Andrea (I loved her) and then I had a nice visit with Kevin.
I finally was allowed to have some fluids. Which made me sick. I asked them to hold off giving me codeine so that I could visit with Kevin a bit. But after a short visit I was ready for more pain killers.
That first night was horrible! The pain was way less then you would expect. But I was woken up on a regular basis to be given medication or to have vital signs checked. I had an I.V. and an arterial line in my left wrist. The arterial line hurt and I was always being told that it was "positional". That means "don't move or tilt your hand at all or this alarm is going to go off and wake you up all night". That's what happened.
I was in an area of NOA nicknamed the "outback" because it has four beds that are all separated from the rest of the unit. The area was very nice. Except that the two patients closest to me were not as alert as me. They needed suction done several times a night (like on he hour). This was very loud. So, between my meds, alarms going off, vital checks and other patients, I didn't sleep at all. But I loved Debbie and Earl. Debbie is just like me...a chatterbox...so we got on like a house on fire. Earl was very nice and he is going to be a great nurse. I woke up with a black eye. It was swollen shut a bit and bloodshot too. I had my arterial line removed in the morning, I got to eat for the first time and I showered in the evening. But I was not allowed to wash my hair. I still can't. Not until February 13th. TWELVE DAYS AFTER MY SURGERY. Yuck!
At some point on this day I opted to stop taking codeine. The codeine was injected and it burned at the injection site. My arm soon became too swollen so I started getting the injections in my stomach. I finally noticed that the burning from the codeine hurt more than my headache. So I switched to Tylenol. I think it's so funny that 24 hours after brain surgery the only pain killers I needed were Tylenol.
At about 11:00 pm I left NOA and went up to the Neuro Ward floor.
NEURO WARD
I was sad to leave NOA. I was always sad to say goodbye to my nurses. I had mixed feeling because I knew that the ward wouldn't be as nice but I was hoping that I would have quieter nights in the ward. I lucked out and got a semi-private room...but the bed was ridiculously NOT comfortable. I was in the ward from Thursday night until Saturday afternoon and I complained about the bed on several occasions. The bed was hard and lumpy. It was soft at the bottom by my feet but from the hips up it dipped down and was hard. When Kevin was visiting I asked the nurse for a softer bed or harder drugs. She said she would see what she could do but nothing was ever done...until an orderly, Curtis, came in. I was out of my bed so he came in to change the sheets. Curtis said "Your bed is broken." SHOCKER!!! Curtis said that the upper half of the mattress in my bed was broken and not inflating. He said it was like I was sleeping on a box spring...after brain surgery. He had the bed replaced in three minutes. Of course, this was two hours before I was released. I had slept on that bed for TWO nights!
I had to stay at the hospital until Saturday because that is when my bandage would come off. When I say bandage, I mean a long band-aid (about 8 inches long) that is held on top of my incision with 5 or 6 small STAPLES!! I had the staples removed and the band-aid came off and then I was told I can call someone to come get me.
I was really shocked that I was heading home from the hospital only three days post surgery but I was looking forward to a good nights sleep and seeing Gracie. YAY!
HOME
Mom and Linda came to pick me up. Mom got me a tea at Tim Horton's. Then we had a quick visit at her place before we went the pharmacy to get my prescription filled. Then I went home.
That was a week ago. Things are going great. I feel much better then I would have thought one would feel after brain surgery. The biggest problem is still sleep. Gracie and Kevin are both sick. I am on steroids which has caused insomnia. So, even though I am fatigued, I find it difficult to sleep. I have to make sure that I don't do too much because I pay for it later if I do.
My black eye is gone. The swelling is almost gone. My headaches are minor. I still have TWENTY-ONE BIG STAPLES in my head (that come out tomorrow). My incision site is itchy and it feels tight. It feels like my hair is all swept into a giant 80's side ponytail held together with a metal banana clip (made of 21 staples). It doesn't really hurt. Everything just feels weird and tight.
Last night was my best night sleep yet! I have a really huge purple bruise on my wrist from the arterial line. I am super gross because I can't wash or brush my hair until tomorrow. OMG, I can't wait!
Okay. I spent two hours rewriting this post. I'm not even spellchecking. I don't want to risk losing it again. Sorry if it doesn't make lots of sense. I wrote it from my iPod so I hope it hasn't replaced any words with completely inappropriate ones.
I just want to take this moment to, once again, thank everyone for all your help. I haven't had to worry about Gracie's care or making dinner. A special thank you to all my wonderful friends and family who have watched Gracie, dropped off food, cleaned, taken me grocery shopping, baked Kevin birthday cupcakes or brought me Starbucks (non-fat, Tazo Chai Latte, No Water - just in case you were wondering). YOU ARE ALL THE BEST!
Also, there has been a problem with the phone lines for a while at the house. They are supposed to be fixed today. So, if you have been trying to reach me and haven't been able to then hopefully as of this afternoon you will be able to. If not, then call my cell or Email/FaceBook me. I don't think that the voicemail is working either. I apologize if I didn't return messages.
For those of you who suffered through reading this whole entry, I will reward you with the picture that Kevin likes to show people and say it's Gracie.
