Lets start by going back a few days. My mom and I left on Tuesday morning after I got the kids on the bus to get down to Milwaukee for a CT with fiducials at 4. My dad was driving down separate and leaving a few hours later. We were saying how nice and weird it was that I was leaving that day and having surgery the next. Usually things don't line up quite so nice and there is a day or weekend in the middle of tests and surgery. I loved that this one was boom boom boom.
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| Saying goodbye to my babies |
On the trip down I had called my nurse coordinator Allyson and left a message for her asking if she could talk to Dr Kassam about having the corner of the plate behind my ear removed. I should have called her the week before, I hope I was not too late, but I figured that I did give her like 4 hours before she left the office for the day. And on Tuesdays Dr Kassam is in the office too.
My mom and I were in Crivitz (about 3 hours from home) when I got a call from Stephanie at Dr Kassam's office. She asked if we were on our way down. I had told her we were and she said that Dr Kassam was wanting to switch our surgery to Thursday because he has an emergency surgery he needed to get in on Wednesday morn. She said she would change the CT to Wednesday and surgery would be Thursday morning. I did my best to stay calm. I know if he is switching the appointment there is a big reason for it. It can be a big mental thing for me when surgery is changed though because in my mind I have been prepping myself for it. But, this time, for some reason it didn't bother me that much. It was only a day later and I would be able to keep busy in the mean time. First thing we did was call my dad. He was an hour into his trip down. We all had to pull over and think of what our next step was going to be. It made sense for him turn around and go back to work. He would leave part way through the next day. We decided that we would stay in Appleton with Kent. My mom and I would go shopping and then out to dinner with Kent once he got out of work.
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| Or maybe it should say keep calm and go shopping! |
The idea of staying in Appleton instead of driving all the way to Milwaukee was kind of nice. When we got there, my mom and I first went to TJ Maxx and then to the mall. I only had a little energy left at the mall and before I knew it I was back in the car. I was going to take a nap and I told my mom to keep shopping. We had nowhere to be and Kent was still at work for a couple hours. Maybe a half hour into being in the car, I got a call from Stephanie again. She said Dr Kassam makes her sound crazy, but she is calling because surgery is moved back to Wednesday morning! She rescheduled my CT for 6PM that night! It was 4 at the time and we need two hours to get the Milwaukee from Appleton. I was super excited and called my mom right away. She was busy shopping and I didn't get an answer so I called my dad next. I told him to "hit the road"! He had just pulled into home after work and said he was ready to go! I tried my mom again and she answered this time. I said lets go! We've got a CT to get to! Surgery is back on tomorrow morning! She quickly tried on a dress (looking for Kent's wedding) and literally came running out of the mall. Haha.
We made it just in time, I jumped out and went into the hospital while my mom parked. I speed walked my way to the radiology department. I ended up waiting for like a 20 minutes to check in. There was a line in front of me. And then when I was brought back to the waiting room, I waited another 30 minutes. So I guess the rush wasn't needed! The fiducials were put on again. They reshaved the same spots as last time and put the stickies on. I had forgotten my scarf in the car so my mom ran back to grab it for me. Then we headed to my Aunt Liza's. She had dinner waiting for us. :) After dinner, I took my shower with the special soap and my dad showed up a few minutes later. I was exhausted from my day - I traveled, did not nap, walked around a mall and got a CT. That is a lot more then I had done on any day previous in the past few weeks! I was ready to get to bed! And I needed to get up at 4:45AM anyway to shower again before leaving for surgery.
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| Fiducials are on! |
So now it is surgery day! Took my shower, put on fresh clothes and off we went. I was brought back to Same Day Surgery to get prepped. This is such a routine thing for me now, I know exactly what to expect next. I was asked a million questions, wiped down with the cleansing pads, put on a gown, took a pee test, got an IV put in successfully on the first try, had the neuro monitor wires put on and marks drawn all over my head. l met with the anesthesiologist, told her that whatever was done last time worked great. I had no nausea or a dry mouth after. She gave me a calming and nausea med a few minutes later. Then one of the nurses came in with the "cute" hair net for me. We had a few minutes to wait and I was getting more and more relaxed. It was getting hard to keep my eyes open! Eventually I passed out! I don't remember saying goodbye to my parents or being rolled into the operating room. It is getting earlier and earlier every time! Maybe next time, I'll be sleeping walking as I shower the morning of. Haha
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| Ready to head to the hospital |
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| Got the marks on my head, neuro wires hooked up too. |
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| Our surgery morning pic! |
Next thing you know, I'm being woke from surgery. I had a CT done and I don't remember that at all. I do remember having the breathing tube in though. And I remember when they pulled it out too. It wasn't as horrible as I thought it would be! So now I am back in my room. I remember getting asked some questions, I remember my nurse Ericka talking about liking one of my tattoos, I was in and out of sleeping. Eventually Dr Kassam came in and I made myself become alert because I wanted to remember what he had to say! He said he was so happy for me and everything went and looks great. After he left, I asked if I could have the catheter removed. I hate having that in. My nurse came in to remove it, one of the girls I had last time! She said I had 6 hours to pee. I am not exactly sure what happens after that if you don't go.... BUT an hour later I was already ready to go! That meant I needed to get up and walk. Mission accomplished! Now, I am feeling pretty darn good! Swelling hasn't had a chance to quick in, pain meds are workin great, no new numb areas, my jaw feels the same as before surgery, and my eye is closing! Nothin to complain about here! Everyone was commenting on how chipper and talkative I was. My nurse joked that I was a pro, hitting all kinds of milestones in a short amount of time. My PT came in and we walked two circles around the ICU. I wasn't exhausted from the walk, it actually felt good to get up and stretch a little. She signed off for PT and OT and the next day I was seeing the speech therapist. My nurse came in and told me that I was going in for an MRI that evening at 6:30. They said it was going to be a long one, but long is usually about 1.5 hours. I knew my aunts and brother Kent were coming to see me but figured they could go eat while I am in the test.
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| How my parents see me as I enter the room. I am still out of it at this point. Awake, but not really. |
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| After Dr Kassam came in and I was more alert. Before swelling takes over. |
I was feeling around on my head, and I started to question if the corner of the plate was gone. I had never got a call back from Allyson so I wasn't sure if that was a good or bad sign. I hope my message had got to Dr Kassam. I didn't see him before surgery either so I didn't get to bring it up to him at all. My head was very tender, especially the sides because that is where the pins are placed to keep my head still. Some areas were swollen and had dried blood on them. I even found a staple in one area behind my ear! All of that made it hard for me to figure out if the corner was still there or not. I would have to ask Dr Kassam or his PA the next day when I saw them.
So now it is time to roll on down for the MRI. I had to stay hooked up to all of my machines and my nurse needed to stay close by while I am in the MRI. As the elevator doors closed I saw my aunts walk by to my room. I was getting pretty tired at this point and said I would just sleep during it. She didn't put the full padding around my head because of the new incision, but we did wrap a towel around it before putting the mask on so that helped me feel less worried about moving. I slept probably the first 45 minutes, and then about a half hour after that the tech came in to talk with me. She said I had about a half hour to go. Then when that was up, she said about 20 more minutes. At this point, over two hours in, I was starting to go crazy! My ass hurt from laying there, my mouth was dry. Every time that the machine stopped moving and making noises I'd be saying to myself, please be done, please be done. I'd be hoping to see the tech open the door. No such luck. The machine would start moving again. Eventually she came in to add some contrast to my IV. She said 15 more minutes. I hope to god that is true!!! And yes, finally it was over. Turns out I was gone for 3.5 hours. That was the record length of an MRI for me!! When I got to my room, my aunts, parents and bro were there. I felt horrible being gone so long! It is now 9:30 and everyone wants to be getting home. Poor Kent drove down to see me and was still heading back that night. We literally had 15 minutes together. My kids were facetiming me too. There was a lot going on! My visitors all stayed for a short time and then they left. They had never went out to eat because they didn't want to be gone when I got back. My mom said they all had a good time talking and not to worry about it!
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| After the lengthy MRI, with my crew for the few minutes that I got to see them! |
It is time to try and sleep, I was exhausted and ready for bed! I slept about 45 min and then was up. An hour later I fell asleep again for about 35 minutes and then was up. And an hour or two after that I slept another 40 minutes and was up. I. Could. Not. Sleep. Maybe it was from the pain meds, maybe the noises, or maybe I was "alert" because I knew my nurse would be in soon to check on me. Whatever it was, sleep did not happen that night! Luckily I had an awesome nurse named Kate and we did a lot of chatting. She helped me get as comfortable as possible. We took out an IV that wasn't needed, didn't put the leg cuffs back on and she would try to not bother me for a few hours so I could work on getting some sleep.
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| Look how taped up this arm is. The other arm had a big plastic brace on it when I came out of surgery. |
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| Look at all the extra hair shaved that didn't need to be! |
During the first night my eye started swelling a lot and really fast. Each hour was dramatically worse. Since I wasn't sleeping, I kept taking pictures to watch the progress. I swelled up the surgery earlier this month but my eye never got as horrible as it did this time. I was curious as to why it got so bad this time. What I found out the next day though, is that they had to mess with the titanium plate to get underneath it to remove the tumor. They had to bend it and cut an area of it to get inside. I think this had to do a lot with the swelling because that whole area where the plate is, is very tender and sore. And the plate literally sits on my brow bone. So a lot was messed with very close to my eye. At this point, when I was talking to Dr Kassam's PA that was in on the surgery, I asked about the corner of the plate behind my ear. He said he got rid of it!!! He cut any corners that were still on the plate. I was surprised with how happy I was by hearing this. I know the corner of the plate was a pain, but if I had to deal with it forever, I would. Finding out that it is gone though, and that the pain behind my ear will be gone forever, I was so VERY excited! I thought that maybe the staple had to do it with it, but that was from one of the pins holding my head, he said it didn't want to stop bleeding so they stapled it shut. He was in no rush to get out of my room and that was so nice, so any little detail that I asked, I would get answers for.
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| Swelling is happening. |
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| This is 45 minutes after the last picture. |
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| Another half hour. |
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| And boom! Just like that it is swelled shut. |
Right after surgery, I looked great. Swelling hasn't had a chance to settle in yet and I am feeling pretty good pain wise. When I woke, my eye was closing all the way! It had not done this the entire time since the last surgery. I remember being so out of it but talking to my nurse Ericka about it and telling her how excited I was that it closed! I could tell it felt good and it wasn't blurry at all. The was enough to make my day right there! The little bit of movement in my cheek and lip were still there too. My mom swears it is even better then before surgery. I have been crossing my fingers that the eye continues to keep closing. Once the swelling kicked in, it was permanently closed for a day. The next morning, it started to open a little bit. That was a good sign because some surgeries, that eye is swelled closed for days. It is really hard to see out of when it first starts opening because it is only open a little bit so my vision is off. The next day when I woke, the eye was open even more! I love seeing such progress in one day! It is the motivation I need to see that healing is happening. Last night my eye looked even better then yesterday morning and now today, it almost looks normal! I have some bruising around it still but that is not a big deal. My eye is still closing, at one point yesterday it was open a tiny bit when I closed it but that was it, and I can deal with that if it continues to be that way. I still have some blurriness going on, it doesn't blink as fast or as well as the other eye, but I will take the little improvements I have seen. My eyelid is very dry, you need to remember how delicate the eyelid skin is, and mine gets stretched to the max. Luckily, my friend Meagan makes amazing lotions and I have been putting that on it religiously and I can tell it is helping a lot.
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| The incision once the dressing came off. |
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| How I looked the entire next day. No use out of that eye. |
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| The morning after when my eye started to open again. |
I was in another nice big room too! When I walked with my PT, she told me there are two big rooms on that floor, the first big room I had for my last surgery, and this surgery I was put in the other big room. It is nice because my parents and visitors are there a lot and we have room for everyone. In my room were two big comfy chairs for my parents and they are put right near a window and the sun was shining in on them. The chairs are located to the right of my bed though so it makes it hard for me to turn that way and talk to them, and it's my bad ear that I can't hear out of. Sometimes my mom would grab another chair and plop it down right in front of my bed. Haha. We could have a stare down or an interrogation!
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| My room. The right front corner was the bathroom, the right back corner was the window and chairs. The back left corner was the computer and machines. |
The only full day I had in the hospital, Dr Kassam came and saw me again, we chatted about the corner of the plate, he said he did get the message and I told him how happy I was that it was gone. I said I will see you on Tuesday in clinic? He said yes you will! He leaves, I believe it is that same day for 3 weeks. So we are lucky we got everything in before he goes. Our plan right now is if all goes well, we will head home after our appointment tuesday and I will look into getting my stitches removed at home so I don't need to come back down a few days later. His PA came in that day to remove the drain tube and staple. Once he pulled the tube out I said that wasn't so bad. He then said really? A lot of people complain about it. Especially the guys! Haha, yeah well, guys act like they are on their death bed when they have a cold right?!?
I saw the speech therapist that day too. She first watched and felt as I swallowed a few different things. Then she had me move around my mouth and tongue. After that we did a lot of speech and memory tests. It was strange, I felt like I was in school again! Memorizing a list of words, reciting words she would say. But in the end, I passed.
The second night in the hospital I did sleep a little better. In the ICU though, the nurse needs to be in every hour to check on you. So that definitely broke my sleep up, but I still got more then the night before. My blood pressure cuff went of every hour too. I get so sick of wearing that thing! It is kind of tight, and it gets warm and itchy under it. Eventually what I do is take it off after the machine takes my blood pressure, set my alarm for 57 minutes, and then put it back on! My nurse was impressed - she said she and some other nurses have tried to put it on their own arm and they can't. I have figured it out by using the bed to help. Desperate times call for desperate measures! Haha.
My last morning there went pretty quick. My mom showed up with a coffee for me, I changed into my regular clothes, got to take every wire connected to me off, that is the best feeling ever! My mom went down the the pharmacy and filled my prescription, and I got one last dose of my favorite IV pain med before we removed the IV. Next thing you know, I am saying goodbye to everyone as I am being wheeled out of the ICU and to my mom's car!
My mom and Peggy have once again been great at waiting on me. I get meals and drinks delivered to me. My mom is in my room the second I need her! Today she says it is shower day and that I need to get up and walk around for a bit. I agree, both probably should be done! It is supposed to reach 88 degrees today so I plan to go sit outside for a short bit. I will need my sunglasses on to protect my eye, and either a hat or a wrap to keep my incision out of the sun. But I know that a little fresh air and vitamin D would be great for me.
All in all, I think this surgery was a good one. The visual recovery has been great, they fixed the corner of the plate, I have no new damage to any nerves, my jaw wasn't messed with at all and they got the last bit of cancer out! I'd say I couldn't have asked for anything better! I am now on the path of healing, and hopefully it is a very long time before I need to have another surgery!
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| 48 hours after surgery |
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| 72 hours after surgery |
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| This morning, 4 days out of surgery. So happy my eye is looking so great so quickly after this surgery! |
Wow, Val, I think your mom is right! Your eye and lip on that side look even better than before! So awesome!
ReplyDeleteYou are one brave and strong woman Val. I can't even imagine going thru what you have. I will continue to prayer for complete healing. Keep up the positive attitude and I too hope to see you as a survivor for way over 30 years.
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