Brain Surgery Recovery – The first two weeks

Surgery was June 12, 2019 We arrived at the hospital at 0630 there was confusion when we got there the several messages I received about where to go was not where they wanted me. The only not friendly person I came across was at this central registration. Which is not the normal for this hospital normally everyone I come across is friendly. Mom and I walked over to the Bobby Bailey tower and some friendly nurse took care of us and got me to my waiting room where I would change and get all my IVs and wait till I brought to each of my procedures. I went down to the stealth MRI I want to say around 0900. I did have my little freak out, it seems I need one. The radiography laughed because the woman right before me was the same way just needed that little outburst then was fine. It was a lot closer to my face this time. I know don’t open your eyes. So the nice woman took me out let me breath and that’s all I needed. I made sure the towel completely covered my eyes. It wasn’t as long as my first MRI and we began with contrast. I would like to see if I can get a copy of the image I am curious to see it. If I can I will put it up on the blog. After the scan I was brought back to my waiting room which is where I would be up till they brought me in to surgery.

My surgeon had a surgery prior to mine which is why mine was late getting started. He came into my room probably around 1100 and marked my head then explained they were resetting up the room for my surgery and they would be uploading my image and so forth and to expect to be heading that way in about 45 minutes to an hour. Honestly I wasn’t really nervous for the surgery I felt the worst part was the MRI.

Once they took me down to the operating room I waited in the hall outside OR 9 (a lucky number) I met with the anesthesiologist, Dr. Gullick’s PA and the OR Nurse as well. They asked me a slew of questions I’m sure I answered several times already. I always feel like they are trying to catch me in a lie. They aren’t I am just suspicious. I signed my consent for anesthesia again, they stuck something in my IV and then they took me into the operating room. This is around the time I asked if they drugged me I was starting to feel funny. Now is the time when you leave your nice warm bed and they put you on the cold silver slab. Those warm blankets they give you are amazing though. I immediately had an oxygen mask on my face and was being instructed to breath deeply and that it was just oxygen. This is around the time it gets fuzzy and I go to sleep. I’m thinking its not just oxygen, see why I’m suspicious. I woke up slightly and was told I was all done and I was being moved to the recovery room. It was like a split second and I was there so I’m guessing I was still a little out of it. The nurse there was very friendly and took good care of me. My immediate pain was in my forehead which I would later find a bandage on.This was apparently from the pins from the head harness I was in during surgery. I also had the normal throat hurting from the breathing tube. Just my immediate feeling was I didn’t feel as awful as I did post mastectomy with immediate reconstruction. That surgery I couldn’t move my entire torso. I could hear when the nurse called my mom so I made sure to wave and she told my mom. In recovery I was just trying to come out of anesthesia and see how much pain I was in. I know I was there for bit waiting for my room in ICU. I took several naps here. This is also around the time I realized I must have a catheter in and I have no idea how it got there and I didn’t know how long it was going to be staying with me. I remember being very thirsty and they didn’t give me water here. In fact it would be longer than my other surgeries before I got water.

Once I moved to ICU was the first time the pain started to intensify. I would later learn the movement of being moved makes me dizzy and out of it. This is completely normal. I got moved from my recovery bed to my ICU bed it’s very hard to just let them move you. Then I was hooked up to all the equipment. They gave me some morphine in my IV and a percocet. My mom and aunt joined me in my ICU not too long after that. I was talking and one of the most amazing things was how much my vision was improving. It was going back to how it was. It had been getting so bad with Fred I didn’t even realize how much if it hadn’t been for my peripheral vision while I was driving this past week. I was having a bad headache so they dimmed the lights and kept my curtain shut to minimize the lights. While mom was there I was told I was allowed to eat but I was on clear liquid. I guess this was better than nothing. They brought up a vegetable broth, apple and grape juices and I even got orange jello. Which was the best part. I was also getting water by this point. Mom stayed a little longer but I was getting morphine and going in and out of naps. They kept me on the morphine every few hours and it was about clockwork for my pain to jump from a 6 to 8 which the IV was good because it worked quickly. Throughout the night Gillian, my night nurse, who was amazing would be in every 2-3 hours. We had to do tests. I would say my name, date, where I was and squeeze hands and push my feet and also get a flashlight in my eyes to see my pupils. I run a low blood pressure and a few times it would drop below 80 and they would come in. I’m guessing this must sound an alarm at their desk area. It was past the initial part of the morphine so they were thinking this is how I usually am at night when I hit the deep sleep since it was consistent throughout the night.

Thursday June 13, 2019 The initial night and in the morning I was in the most pain. We switched over to the Percocet pills mid morning so I could adjust to going home with pain pills. Around 0530 I was taken down to get my CT if the brain. Now whenever they would move me was when I would get really dizzy and they said that was normal that kind of movement would bother me. The scan came back looking good. I got cleared back to solid foods that morning and they brought me a fruit plate for breakfast. I slept most of the morning. Dr. Gullick stopped by around 0900, I think. This is the first time I remember talking to him. I know I heard him in recovery but I was so in and out of it. He explained the tumor popped right out. It was actually very surprising to him, I guess they are usually mushy and fall apart. See Fred was ready for an eviction and took it like a champ. I am expecting pathology back sometime next week. On Thursday the 20th I get the staples out. He also told me I had to be here least 24 hours from surgery so he would be doing my discharge paperwork later that day. He also said one of the pins from the head harness made my forehead bleed which is why I had a bandage on my forehead and he removed it since it wasn’t something that needed to stay on. He was on his way to another surgery.

My mom returned to the hospital about 0930. I was in and out of sleep for most of the morning. She also had taken my phone home Wednesday night since there was no need for me to have it. It’s not like I could focus enough to send anything. Plus when I came from recovery they had shut my curtains and dimmed all the lights cause my headache was so light sensitive. Light was still bothering me on Thursday a lot which is probably why the phone screen was as well. I have been limiting my screen time a lot. I know I put a post up on all my Facebook and Instagram just letting everyone know I was recovering sometime that afternoon.

Most of Thursday I was in bed in ICU. They have you hooked up to everything so unless they come in and unhook me I am not going anywhere. Sometime that morning Dr. Gullick’s PA had come in while my mother was there. I inquired about when I would begin my blood thinners since I have a PVT in the vein going into my liver which was discovered when I was initially diagnosed with breast cancer. She told us I would be off thinners for at least 2 weeks. I had never been off them this long after surgery or at all since being diagnosed with the blood clot. This was the only time anyone spoke to us about them.

Around 1430 mom was freezing so she took a walk outside to warm up. While she was gone I got a visit from the PT nurses which for me to be released I had to go through PT. This was good. This was the first time I would be walking around more than to the restroom located in my room. They unhooked me and put a belt on me. In case I tried to make a quick get away, ok probably not. I walked all around the ICU outside my room it made a big circle. Then I had to do a grapevine walk. Which is some kind of walk where you cross your legs over each other from side to side and behind them as well. Surprisingly I did quite well. Since my doctor had been talking about releasing me straight from ICU vs going to another room etc… I also had to be able to go up and down stairs so we went into a stairwell to verify I could handle stairs. Now I didn’t make any record times on these tasks but I was my usual laughing self and getting through everything they told me to do. When I returned to the room one of these lovely nurses brought me a toothbrush, toothpaste, face wash etc so I could feel more human like. They also set me up in a chair (I was asked if I’d prefer this which I did) versus making me lay back down. I think being up helped a lot.

While I was in surgery they did put another IV in my left arm which I have lymph nodes removed on that side so I never stick or do any blood pressure on the left. I was even wearing the limp alert bracelet. This was surprising for me but they said it was done in case I was needing a blood transfusion however when the two PT nurses came they were concerned cause it had been swelling on that side and I explained all night it was hurting. This was probably the first time I had seen any real swelling from that arm. Mom returned not too long after and met the girls then they went on their way telling me I passed PT and would put that on my paperwork so it wouldn’t delay the releasing of me once the doctor put the orders in. Dr. Gullick returned not too long after we chatted a bit more and he said he was starting my discharge paperwork. He also said to make the appointment to have the staples removed for next Thursday and if he was booked to explain to the receptionist he would be able to fit me in since it wouldn’t take that long. As happy as I am about the removal of the staples I’m also not looking forward to it. Hopefully it feels better than when they removed the drains from my mastectomy.

About 1630 mom headed out to get the car and I had all my IVs removed most of the weird stickers they stick all over your body, it seems on purpose. I got my ride out in a wheelchair and into the car. Now the car ride was something else. Moving even in the wheelchair I felt like I was going so fast, I wasn’t, I had a great get away driver named Kenneth he was awesome. Motion definitely was an issue. When we were driving mom had to take the speed humps very slow cause it was messing with me. We made one quick stop since it was on the way to pick up Hooch from daycare who was so happy to see me but so exhausted from playing all day. Which was the goal. Once we got home I was one the couch and mom went out and picked up all my prescriptions. It’s weird to think I was having brain surgery on Wednesday and now I was home Thursday night.

Friday June 14, 2019 The first night was an adjustment. I was medicated but I had to force myself on my left side when I got into my bed. I am a right side sleeper. I did wake up with numbness on my left arm which I had not been having since beginning the steroids once Fred was discovered. I did make sure to note this and will tell the surgeon if it continues. We have to make sure to document any of the neurological issues and report them. I began the anti seizure medication in the hospital and I take one in the morning and one in the evening. I also was instructed when to start tapering off the steroids. My surgeon is one who likes to try to get you off them quickly. So by Monday I would be down to 2 pills and Tuesday I would be off of them. Hopefully the lovely steroid weight will disappear as quickly. Ha Ha I somehow doubt this. I was in a fog most of the day which was most likely from anesthesia and the pain medication as well. I did try to respond to everyone’s messages via text. I am still not up for phone conversations I did have to talk to the hospital and a doctor’s office which was very challenging I was finding it hard to focus on what I needed to say and what was being said to me. Which is why I haven’t been up for phone calls yet. Now texts you may find me start and forget to finish but I am improving. Mom and Amy have been really good with updating everyone when they are asked. Friday I will say I don’t remember a whole lot. I was on the front porch in the morning sitting and then on the couch. I was able to walk around the house slowly without too many issues. I was dizzy if I attempted to go to fast or turn my head too fast. The dogs would pace me and follow me everywhere. I took my pain medication regularly as prescribed and was still getting consistent headaches. All completely normal.

Saturday June 15, 2019 Each day I feel like I am improving. I didn’t take my pain medication till mid morning. I used tylenol in the morning since the staples were bothering me a lot. In case you haven’t realized yet I don’t like the staples however, I was told they are better than sutures so I will just have to take my surgeon’s word on that one. Amy came over around 1300 to give mom a break and she needed it. She was able to lay down and relax while we sat on the porch. I don’t know how much I kept up with the conversations but one on one I seem to be alright. I was glad mom got to relax some, she had a pretty stressful week and I think it finally was all hitting her. It was also very good for me as well so I was happy she asked if she could come by for a visit.

Sunday June 16, 2019 I was more tired today and my head hurt more as well. I didn’t feel like writing in the mornings which is what I had been doing to keep up with the documentation. I usually just sit on the front porch and write some each morning. I do love my front porch it’s very peaceful in the mornings before it gets too hot and humid later.

Monday June 17, 2019 Today we went to the grocery store so I could walk around. I am suppose to be walking more and its easier in an air conditioned space so we went to publix and I leaned on the cart and we went up and down the aisles. Riding in the car is not the most fun. I get dizzy especially if I move my head too fast. Obviously I am still not allowed to drive.

Tuesday June 18, 2019 Today I walked around the block with Dino and my mom after Hooch was dropped off at daycare. We also ran to target today which is where I got my “exercise” in where I got a cart and we walked through the store.

Wednesday June 19, 2019 Today was the first day with no steroids. I was also very exhausted all day. I d0 the best in the morning and then in the afternoons I have to take a nap or lay down. I fell asleep so hard in the afternoon I didn’t even hear Dino bark when someone came to the door to drop off a delivery. My mom was very shocked when I didn’t wake up.

Thursday June 20, 2019 Today I went back to Dr. Gullick’s office and had a post surgery visit. He told me everything I had been dealing with was normal and to be expected. My energy being higher in the morning is normal and afternoons it would drop off. Also if I’m tired I am to sleep. The headaches I was getting is normal and expected. The incision looked well and I got my staples removed. The removal of the staples were not as bad as I had expected, given I did take a pain pill prior to coming. I learned when the drains were removed after my mastectomy. It would kind of just pinch a little if it caught the hair a certain way but not too painful. I think a few of them bled a little.

I did get the pathology back from the tumor and it is my left breast cancer; PR negative ER negative and HER2 positive and grade 3. The grade is how aggressive it is. Of the two cancers this was the one we expected it to be. Although I was hoping for a benign tumor it could always be worse.

Friday June 21, 2019 I woke with the worst headache pain. I hadn’t been in this much pain since the hospital. I woke up around 0600 and took a pain pill and my kepper (anti-seizure medicine) I fell back asleep and was in and out of consciousness for the next few hours and the migraine didn’t improve. This was the first day I started running a fever and it was 101.3 this morning. I am not sure if it was a migraine but the amount of pain I was in was about the equivalent and the only thing I could compare it to. I think at one point I texted my mom to have her get the dogs since they wouldn’t leave my side but I knew they needed to eat. I think around 1100 I managed to move out to the couch and took another pain pill. The first pill had no effect and the second one really didn’t either. By noon I was coming out of it and I had the “hangover migraine” feeling. I also had 3 aunts coming down to visit with me. These are my mom’s sisters. Today I had another doctors appointment which was with Dr. Simpson in the afternoon. They were driving us there. My aunt Tara came into the appointment with me while the others stayed in the main waiting room. Dr. Simpson came in and we discussed the results. Assuming that Dr. Benton (radiation oncologist) approves I will begin receiving my chemo (Kadcyla) and my Lupron on June 28 and due to the fact that my chemo does not penetrate the blood/brain barrier I will be receiving a brain MRI every 4-6 months to monitor the brain and make sure there are no more brain metastasis(mets) We also discussed the headache from the morning and I told him my pain level was a 10 which I have a high pain tolerance for him to hear this was a concern for him. He did tell me I could take more than one pain pill at a time and the timing between them was set up as a range that sometimes I may need to take them closer together and this was one of those situations. This was probably the time I should have mentioned to Dr. Simpson I was still off the blood thinners but give me a break I did just have brain surgery and didn’t think of it.

Saturday June 22, 2019 Today I was better than yesterday but really anything was an improvement from Friday. I was still running a fever but it was lower only about 100.4 I took some Tylenol and was moving around more. I knew my aunts would be coming back down for a lunch visit today since they were all flying back home the next day. Late afternoon I started getting my usual tired and was most likely sound asleep on the couch. Today when I took my nightly medicines I added back my Xarelto I honestly was starting to get nervous about being off it and started getting this abdominal pain that was very close to the original pain when I was first told I had a blood clot.

Sunday June 23, 2019 and Monday June 24, 2019 I am going to lump these two days together because they are both a blur. I ran a fever Sunday of 100.4 pretty much all day. I was on the couch with an ice pack and I swapped through the day between Tylenol and my pain pills. I did call Dr. Gullick’s office this day and when he returned my call he honestly didn’t seem that concerned. He said since it was a low grade fever he didn’t know what it could be. Monday was even worse my fever was all day and it reached 101 as a high for that day I was also having a lot of upper abdominal pain. This is when it made me start thinking it could be related to my blood clot. I didn’t even get out of bed until well into the afternoon. I just kept an ice pack on my head. Sometime Monday night into Tuesday my fever finally broke and that made a huge difference.

This was the first two weeks of recovery. This was the easiest way for me to update everyone. Writing has been good for me. I know I still have been very quiet on social media and through texts. I am not quite back to myself. I get overwhelmed easy and sometimes I begin to respond and get distracted.

As I finish this up it’s now Tuesday July 2, 2019 yesterday (July 1, 2019) I had chemo because of some confusion last Friday (June 28, 2019) it wasn’t ready so all I had was my monthly Lupron injection. Anytime chemo is delayed I won’t complain too much. I really enjoyed my “chemo vacation” even if it was for brain surgery. Today we went and saw Dr. Benton, my radiation oncologist. He told me I would be going to their Snellville, Ga location and working with a colleague of his Dr. Tracy McElveen, who would be doing my treatment at that facility. He of course would be involved as well. My treatment will be SRS (stereotactic radiosurgery) and that facility has the best equipment for this treatment. I should be hearing later this week from Dr. Benton once he talks with Dr. McElveen and he will set up all the appointments. He also will be talking to Dr. Simpson (my oncologist) inquire about another treatment in addition to my current chemo. This would penetrate the blood/brain barrier unlike my chemo.

I feel today we got some more questions answered and moving toward the next stage of this journey. As I learn more I will keep everyone updated. I will apologize for any spelling or grammar errors. I tried to correct what I saw but you know I did just have brain surgery.