Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Thursday, November 10, 2022
Nov 2022 results of trial med
Friday, March 23, 2018
March 2018 Lung biopsy
Hello! It’s been a while, time for an update. My last post was info on the fact that I didn’t need to see the doctors for two months and they thought everything was was stable. It was a great feeling!
I did get a call a few days later from my neurosurgeon telling me to get an MRI done up here in 4 weeks since I was already getting a CT done then. I didn’t mind doing them because it’s like a treat to have the scans done here in town! After having them I knew I’d probably be waiting a week or so before hearing any news. In the end, it was about a month before I heard anything! Between a miscommunication with where my scans were and then my doctor who reads the scans was out of town. But honestly I was okay with hearing nothing. I had good news in December and I wanted to keep that going. I didn’t want to hear something bad. I just wanted a break from everything.
Luckily when I did get news, I was told there was no change in the scans. That was a relief! My next scans had been pushed out 3 weeks later then planned and I was starting to stress about them but thankfully hearing this news put me back at ease.
I had talked about going to see my friend in Florida which I do most years. But my next scans ended up being scheduled the week that I planned to go, so I worked it out where I could go to my appts and then fly out from Milwaukee.
My friend Jannelle that works with me came along on the trip. We drove down and I had my scans late Monday night. We were at the hospital for hours! My scans took forever. After that we went to our hotel and met my Aunt Liza for dinner.
The next morning we had to be back for some blood work and then met with two docs. The first was the oncologist I had just started seeing in December for my lungs. He pulled up my scans and said that nothing had changed! Hurray!! He said I have been the topic of conversation all morning! Between him and my neurosurgeon going back and forth about things.
My friend Jannelle that works with me came along on the trip. We drove down and I had my scans late Monday night. We were at the hospital for hours! My scans took forever. After that we went to our hotel and met my Aunt Liza for dinner.
The next morning we had to be back for some blood work and then met with two docs. The first was the oncologist I had just started seeing in December for my lungs. He pulled up my scans and said that nothing had changed! Hurray!! He said I have been the topic of conversation all morning! Between him and my neurosurgeon going back and forth about things.
He thinks we should keep things as they are. Since there is no change let’s keep watching and not put me through anything that isn’t needed until necessary. I agreed, I liked the idea of doing nothing and coming back in a few months.
But, then I went to see Dr Kassam. He had a crew of doctors in with him and wrote a big graph type thing on a board explaining how the head and lungs tie into each other. It showed every treatment we have used and all. He wants to come up a plan of meds we can use to fight this. To keep anything from growing. He explained that the research they were going to do for me, isn’t something they can do for every patient because they wouldn’t have time for anything else. But being special to them, they are doing it for me! A lot of time is involved for research and fighting with insurance companies to do this.
Dr Kassam also wanted to do a lung biopsy to see what we are dealing with. He doesn’t want to wait for it to grow, he wants to be proactive. And as much as I didn’t want to do it, or deal with that, I knew he was right. So the day after vacation, I was scheduled for the biopsy.
I was bummed about this. The last thing I wanted to do was worry about another body part!! It seems we finally have the brain tumors under control and now there is this. And I was looking forward to vacation but now the day I get back, I need to have this done, so it will be on my mind. I just kept telling myself to go and have fun, and not think about anything! And for the most part, I did just that! It would pop into my head at times but I did my best to push it out.
Vacation was relaxing and great. We had great weather, it was great to see my friends, and we had a great time meeting new people and there were lots of laughs involved! If my kids were there with me, I’d say leave us here! :) Plus I didn't love the idea of heading back for the biopsy.
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| love my friends! |
We flew back to Milwaukee early Monday morning. Right away we had to go to the hospital for blood work and to meet with my neuro-oncologist named Dr Bobustuc. (Dr Bob for short!) He has been around from the very beginning and now has a big part in deciding our plan of attack. He said he has done a lot of studying on it and he believes these pills are going to help me live a long healthy life! A few months ago I had some tissue left from a biopsy sent out to Foundation 1 for testing. We did not have any good matches but based off of the results and other research, Dr Bobustuc came up with 5 medications I will be trying.
He explained it like this: when u look at a photo of someone, just by looking at their face, you can not figure out their personality. BUT - by looking at the whole picture - check out their hair color, the style of their hair, the clothes they are wearing, the pose they are making. Looking at these things, you can get an idea of their personality. The same for this cancer. Looking at it, there is no perfect pill. But by looking at the characteristics of it, there are many more options out there. And that is how he came up with this mixture. Some are forms of chemo and others aren’t. One is a pill used to help alcoholics stop drinking! I don’t know the reason behind each..but there is obviously a good explanation which I will find out over time!
He explained it like this: when u look at a photo of someone, just by looking at their face, you can not figure out their personality. BUT - by looking at the whole picture - check out their hair color, the style of their hair, the clothes they are wearing, the pose they are making. Looking at these things, you can get an idea of their personality. The same for this cancer. Looking at it, there is no perfect pill. But by looking at the characteristics of it, there are many more options out there. And that is how he came up with this mixture. Some are forms of chemo and others aren’t. One is a pill used to help alcoholics stop drinking! I don’t know the reason behind each..but there is obviously a good explanation which I will find out over time!
No one has had these 5 pills used together. I am the first....We will start with a very low dose of each and see how I react. I will take them for one week, then off the next week. We will play with the dose and eventually spread the weeks out to farther and farther between each use.
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| 3 of the 5 pills |
I’m not sure how I feel about this. I like that they are all in a pill form, and that I can take them from home. I will just have to go into our hospital for blood work every now and then to track my levels. A big question is how I will feel on all of these though. I know I am taking a nausea pill with one to fight an upset stomach. Some pill’s side effects talk of mouth sores again...oooh lord. There are many that come with each pill. The chances of getting some are high and others are low. We won’t have answers to this until I start them.
Dr Bob said it will be a few weeks before I start. He is now dealing with getting approval from my insurance. They may give him a hard time since some of these pills are not made for my ‘problem’. A few of them he already got approved for, and one was declined so he is now making an appeal. Another we found out will cost me 400 bucks a month! We are trying to get that price down. And the others he is still working on.
That was it for appts on Monday. After that we grabbed fast food and went straight to our hotel. We had to be up at 3AM to fly out that morning so we were exhausted by this point and didn’t leave our beds the rest of the day! Haha.
Early the next morning we were up for the lung biopsy. We had to get there a couple hrs prior to the procedure to prep for it. No eating after midnight the night before. I was passed out long before then!
Once in the room for the procedure, which was called a CT guided lung biopsy, I first had to get in a position on my stomach that I’d be in the entire time. So however I laid my head, it wasn’t gonna move again until done. That actually took a while for me to figure out because if I laid on my ‘good ear’ then I couldn’t hear, but if I laid on my ‘bad ear’ it would get uncomfortable real quick! Can’t go face down either... I came up with a position that was on my good side, but most of my ear wasn’t on the pillow so I could still hear! Lol.
Next came the first CT. This showed the Dr exactly where to go. Then a spot was marked on my back. After that I was given a calming med to help me relax and forget what was going on and a pain med to help with what was about to happen. Next came the numbing shots on my back where the needle was going in. There were a few CT scans going on at times, I felt the needle go in, and heard some little clamping noises and I knew that was the cutting of the biopsy. It didn’t feel good, but it also wasn’t the worst pain either. One more CT was done, then I was being transferred to a bed.
Next came the first CT. This showed the Dr exactly where to go. Then a spot was marked on my back. After that I was given a calming med to help me relax and forget what was going on and a pain med to help with what was about to happen. Next came the numbing shots on my back where the needle was going in. There were a few CT scans going on at times, I felt the needle go in, and heard some little clamping noises and I knew that was the cutting of the biopsy. It didn’t feel good, but it also wasn’t the worst pain either. One more CT was done, then I was being transferred to a bed.
My nurse told me I might need to cough and it is normal to see some blood. Sure enough, the second I started moving, I coughed and there was blood. Not a lot, but enough to make a gross face over. Haha.
I had an X-ray done right away to see how my lungs looked. They want to make sure there isn’t an air leak or excessive blood. Then I can go back to my room for two more hours, get another X-ray and if that one looks good, we are free to go.
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| Jannelle was a great nurse! |
I was tired after this and my body, basically my chest, hurt every time I took a breath in. They told me that was normal and I’d feel better the next day. The nurse also said no driving, lifting, exercising and not to remove or get the dressing on my back wet for 48 hrs.
2 hrs flew by and I had the last X-ray. They said it looked good and we were on our way! But about 20 minutes into the drive, the Dr who did the biopsy called me and said they let us go so quick, he didn't get a chance to come talk to me. There is an air leak, which is small and should heal on its own, but if I get any more sore then I am,or if more blood starts coming up, that I need to find a hospital. Well this made me worried! He told me before the procedure that this could happen but the chances were low. And of course it happened!
So here we are, 3 days out of this, and I still have a sore chest when I breath. This morning I was still coughing up blood too. Not a lot of pain, and not a lot of blood. But my nurse had told me I would be good as new the next day and that is not the case! If I am feeling this way in a few more days, I will probably go in and get an X-ray here just for reassurance that everything is okay and starting to heal.
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| the spot of the biopsy |
I should get biopsy answers sometime this next week.
I feel like a lot has happened recently but I try to remind myself that nothing has grown. There are no changes and all of this is to prevent growth from happening. Going through these things are to help keep me from needing to do anything more serious and to also help keep me on this earth for a very long time!
Monday, November 6, 2017
New updates, chemo talk and radiation recovery - November 2017
Here we are, beginning of November. I just got home from a trip to Milwaukee to see some doctors. I want to update you all on that but first I want to talk about radiation recovery and how I am doing since my May surgeries.
The other day we were 6 months out of surgery, and 7 weeks out of radiation.
My mouth, from radiation, is still horrible! It is better then it was 7 weeks ago, but it is no where near healed and I thought by this point I would be great. Or at least eating whatever I want by now. That is definitely not the case though.. I still drink only water. I have tested a few teas, hot chocolate and coffee. Most hurt. First few sips of it might be okay but then after that I am done and throwing it out. I did do a coffee yesterday and the day before and i actually got to finish it! I need to wait a long time to start drinking it though because anything too hot hurts too. Nothing with carbonation either. Food, I try to stick to soft solids. Nothing super crunchy or sharp. Nothing spicy. Nothing acidic. Nothing to smooth(like soup) because then it travels over to the "bad" side and it starts to sting. I can talk a lot better now then I could, but if I do too much that still hurts also! When I look in my mouth, it physically looks better, but the painful feelings are still there. It is basically a never ending nightmare.
I have recently cut down on my pain meds so that may be a reason I feel like my mouth has been hurting more then usual lately. Every now and then I do have a good day though. Two days ago I took two pain pills total all day. I used my numbing rinse many times but the fact that only two pills were taken is a good sign! I live off of the numbing rinse though! Anytime my mouth starts acting up I can swish that for a bit and then I'm good to go for a while!
Most of the swelling is gone. I have some in my cheek still but I imagine that it just needs more time like my mouth does, to heal.
I think it has been a few blog posts since I have updated you all on my facial movements and the nerves around that area. Some areas are moving so much more then they were and I am so grateful for that! My cheek moves a lot, my nostril moves and my top lip moves quite a bit too. My bottom lip moves some, but I think a lot of it has to do with my cheek pulling it into a smile! The lip itself is 100 percent numb to the touch. My eyebrow still has zero movement at all. Being 6 months out, I have a hard time believing that it is ever going to move. The other areas have had some sort of improvement and I believe that they can even improve more then where they are now. But I don't have that hope for the eyebrow. Sometimes when I get down about how my face looks, I try to remind myself that at one point, there was zero movement on that side AND my eye was stuck open! That is usually enough to help chipper myself up. We will see how my nerves react to the winter. In the beginning I only wore tank tops so nothing was touching my face or neck, but now I can do a regular neck shirt. We will see about scarves thought. They may be too much on my face... When I get the goosebumps, my teeth nerves freak out and they start to hurt. It only last about 30 seconds and then is gone, but think how often the goosebumps happen during the winter!!
My neck is still very tight when I turn to the left. My mouth also has a hard time opening real wide. I blame some of that on surgery, and some of it on radiation. One of my nurses recommended that I get some help from PT for both of these problems. They will show me some stretches to do and some massaging techniques. Both to help loosen the problem areas.
My energy I have noticed has improved a lot more recently. I don't take naps during the day anymore. I can function even if I only end up with 6 hours of sleep the night before. The most I work is still only 5 hours a day. I wish I could add an hour or two onto that but my back physically wont let me. I would love to start exercising but my mouth makes that impossible still. It either starts hurting, or the nerves in my mouth go crazy and that makes my teeth feel like they hurt. It's a slow process of recovery...gotta deal with one thing at a time and right now that is for my mouth to heal up. Because then I can start eating more, then I can start exercising, then I can start working more. It is like a chain reaction!
Every two weeks I have been seeing my Marquette ENT and my ear is finally making progress! I do not need to keep cotton in my ear to catch any fluid. Every time I have seen him, my ear has been too swollen to actually see far enough inside to see what is going on. He wants to make sure the tube is in place. If not, that could be part of the reason why I can not hear out of that ear yet. But more recently we have seen progress. The last time I saw him he said he was happy with what he was seeing, not quite to the point he can see the tube, but a lot of healing has happened. And more recently, my ear will pop and I can actually hear out of it for a short while. So that is a good sign! Means it still works like it should. Two days ago, a different Doc looked in my ear and he saw the tube! I see my ENT in about 3 weeks, but part of me wants to call him up now and be like, Guess what!!!!
So, now onto my most recent appointments in Milwaukee. 3 weeks ago my Mom and I went down for my MRI. I had it the night before I met with my Doctors. It was another long one, over two hours. On our walk in the hospital to the radiology department we came across a sign pointing into a room that said "Brain Tumor Support Group". I wanted my mom to go sit in there and listen while I was in the MRI but she said no!
Anyways, the next day we went back to the hospital to meet with the Docs. I was 4 weeks out of radiation at that point and I believed everything was going to come back good. The docs had removed all of the tumor, I had radiation as a precaution. So chances are looking pretty good right? Well once again, we left there in a bit of shock. The Doctors said they were happy with what they had saw on the MRI, but of course everything on that side looks different because of all the surgeries I have had. They said there are a couple lymph nodes they want to keep an eye on. And after that they told me that they wanted me to get in touch with the head and neck oncologist. They feel I should further my treatment with them. I said, "Wait, you're saying that you think I should look into chemo?" And their answer was, yes. In my head at this point, I'm like, are you freakin kidding me!! I thought we were gonna come down for the scan and then hear, "Things look good, go home and heal and we will see you back in 3 or 4 months for another scan." Wrong.
We set up my next scan with them for the end of January and off we went. Not even ten minutes into the car ride home I had a call from my nurse and she had asked if we left the hospital yet. They spotted something in my temporal area and they wanted me to get a CT scan so they can have a better look at it. I had told her we were already headed home and I wanted to make it back for my sons last football game. We then decided that I would get the scan done at home and have it sent down to them. The doctors also decided that the end of January was too far away for the next scan and bumped it up to the beginning of January instead. GEEZE! None of this makes me feel too confident.
A few days after being home I had heard from my nurse many times, just getting my info and checking in to see if I had set up the scan. I did eventually and about a week after being home I had a call from Dr Taylor's office, head and neck oncology. The nurse was very nice and her name was Valerie! It was a Wednesday and she offered me a 9 oclock appointment that Friday, or a 2 oclock the next Friday. Being that it is hard to drop everything and go, I picked the latter one.
My mom and I had just been there the week before, so I told her I will see about bringing a friend with me this time so she doesn't need to go! My friend Stacy had been with me from the beginning and she is an easy person to travel with so I asked her and she was happy to come along! We left around 8 Friday morning and ended up getting there with over an hour to kill so we first ran into the beauty supply so I could grab some things for work and then we went to Chipotle to get some lunch. Both places are on the same road as the hospital along with our hotel.
When we got to the hospital we went up to the 9 floor. I can't remember if I had been in this office before or not. I did see Dr Howard, an oncologist there the first time so I think I may have been up there once but I don't remember. We were brought back to a room right away, but then waited almost an hour before seeing the doctor. I had read reviews on him and a lot of people first mentioned how amazing and great he is, and then said that they waited a long time in the office. So at least we were prepared for it! Once he came in though, he spent a lot of time with us. He had my files, which were inches thick! (I suppose that isn't surprising!) The nurses and anyone who popped in also mentioned that they recognized my name due to everything I have had done at that hospital. First thing he had me do was start at the very beginning and tell him everything. He wrote it down in his own notes and asked questions along the way. He also pulled up scans from previous surgeries as I was talking about it.
He explained that there are two small cancer areas in my temporal region. One is near my ear canal and the other is up a little higher. I am unsure if these were left from surgery, or if they are new growths since my last MRI.
After that was all said and done, he explained that they are going to take tumor samples they have from my previous surgery and run 4 tests on it in the hospital and send some more out for extensive testing. The tumor is being tested with different kinds of chemos and we will find out if the tumor responds to any of them. He explained that this will take a few weeks to get answers. And I told him I was good with that because I'd really like my mouth to be feeling better and get a little weight on before starting chemotherapy. Plus, it gives me time to prep and prepare myself for another round of chemo! He said that he doesn't see a problem with me being able to get the chemo done here at our hospital. I really like the idea of that - Milwaukee can still call the shots, but it gets carried out here. Less travel, especially now that winter is upon us, will be good.
That brings us to the present. I am not sure how I feel about it all. Chemo wasn't the worst thing in the world for me last time. I didn't enjoy anything about it, but radiation ended up being much worse for me. With chemo, I would feel bad for a handful of days after getting it, but then I'd feel good again for a little while until the next round. With radiation, there was no good days. It just got worse and worse every single day. The thought of doing chemo again doesn't scare me, do I like the idea of possibly losing my hair again?! No. I finally have hair that I can throw in a ponytail or do whatever with. Am I ready to lose it again, absolutely not. But, every chemo is different. There are hundreds of chemos out there. Some are IV's, some are pills. Some you lose hair on, some you don't. Some you can take at home, others in the hospital. Some you take daily, some are once a week. So it will all depend on what concoction I end up with. There is this new thing out there called a 'cold cap'. You wear these cold hats on your head while you are getting treatment and it is supposed to help keep your hair. The hat has to stay under a certain temperature the entire time though, so you have multiple hats on dry ice in a cooler, and you keep switching out the hats. What I have read from reviews is, that most people's hair gets thinner but they didn't lose it. I think it might be worth a try! Cold has some sort of affect on chemo because last time that I got it, I was supposed to suck on ice chips as I got treatment and that would help my mouth from forming sores.
So now we are back to the waiting game. Like I said, I am in no rush to get started with this. And in 1.5 weeks a couple friends and I are heading to Vegas. It was supposed to be a trip to celebrate being done with everything but now it has turned into a trip to have one last 'hurrah' before going back in for more treatment.
It is what it is...I guess I am a bit numb to this new news still. I don't really have a lot of feelings for what is going on right now. I thought I was going to be done, and I am not. I thought it was finally time to heal, and now it isn't. It is disappointing. And tiring...... 3.5 years I have been in this battle. I am lucky I had a break during the middle of it and I hope that I soon can have a break from it again. Could chemo be the last step in this round of fighting?
We will see what the future brings.
The other day we were 6 months out of surgery, and 7 weeks out of radiation.
My mouth, from radiation, is still horrible! It is better then it was 7 weeks ago, but it is no where near healed and I thought by this point I would be great. Or at least eating whatever I want by now. That is definitely not the case though.. I still drink only water. I have tested a few teas, hot chocolate and coffee. Most hurt. First few sips of it might be okay but then after that I am done and throwing it out. I did do a coffee yesterday and the day before and i actually got to finish it! I need to wait a long time to start drinking it though because anything too hot hurts too. Nothing with carbonation either. Food, I try to stick to soft solids. Nothing super crunchy or sharp. Nothing spicy. Nothing acidic. Nothing to smooth(like soup) because then it travels over to the "bad" side and it starts to sting. I can talk a lot better now then I could, but if I do too much that still hurts also! When I look in my mouth, it physically looks better, but the painful feelings are still there. It is basically a never ending nightmare.
I have recently cut down on my pain meds so that may be a reason I feel like my mouth has been hurting more then usual lately. Every now and then I do have a good day though. Two days ago I took two pain pills total all day. I used my numbing rinse many times but the fact that only two pills were taken is a good sign! I live off of the numbing rinse though! Anytime my mouth starts acting up I can swish that for a bit and then I'm good to go for a while!
Most of the swelling is gone. I have some in my cheek still but I imagine that it just needs more time like my mouth does, to heal.
I think it has been a few blog posts since I have updated you all on my facial movements and the nerves around that area. Some areas are moving so much more then they were and I am so grateful for that! My cheek moves a lot, my nostril moves and my top lip moves quite a bit too. My bottom lip moves some, but I think a lot of it has to do with my cheek pulling it into a smile! The lip itself is 100 percent numb to the touch. My eyebrow still has zero movement at all. Being 6 months out, I have a hard time believing that it is ever going to move. The other areas have had some sort of improvement and I believe that they can even improve more then where they are now. But I don't have that hope for the eyebrow. Sometimes when I get down about how my face looks, I try to remind myself that at one point, there was zero movement on that side AND my eye was stuck open! That is usually enough to help chipper myself up. We will see how my nerves react to the winter. In the beginning I only wore tank tops so nothing was touching my face or neck, but now I can do a regular neck shirt. We will see about scarves thought. They may be too much on my face... When I get the goosebumps, my teeth nerves freak out and they start to hurt. It only last about 30 seconds and then is gone, but think how often the goosebumps happen during the winter!!
My neck is still very tight when I turn to the left. My mouth also has a hard time opening real wide. I blame some of that on surgery, and some of it on radiation. One of my nurses recommended that I get some help from PT for both of these problems. They will show me some stretches to do and some massaging techniques. Both to help loosen the problem areas.
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| Incision is looking good, some swelling under my chin, and on my cheek still. |
Every two weeks I have been seeing my Marquette ENT and my ear is finally making progress! I do not need to keep cotton in my ear to catch any fluid. Every time I have seen him, my ear has been too swollen to actually see far enough inside to see what is going on. He wants to make sure the tube is in place. If not, that could be part of the reason why I can not hear out of that ear yet. But more recently we have seen progress. The last time I saw him he said he was happy with what he was seeing, not quite to the point he can see the tube, but a lot of healing has happened. And more recently, my ear will pop and I can actually hear out of it for a short while. So that is a good sign! Means it still works like it should. Two days ago, a different Doc looked in my ear and he saw the tube! I see my ENT in about 3 weeks, but part of me wants to call him up now and be like, Guess what!!!!
So, now onto my most recent appointments in Milwaukee. 3 weeks ago my Mom and I went down for my MRI. I had it the night before I met with my Doctors. It was another long one, over two hours. On our walk in the hospital to the radiology department we came across a sign pointing into a room that said "Brain Tumor Support Group". I wanted my mom to go sit in there and listen while I was in the MRI but she said no!
Anyways, the next day we went back to the hospital to meet with the Docs. I was 4 weeks out of radiation at that point and I believed everything was going to come back good. The docs had removed all of the tumor, I had radiation as a precaution. So chances are looking pretty good right? Well once again, we left there in a bit of shock. The Doctors said they were happy with what they had saw on the MRI, but of course everything on that side looks different because of all the surgeries I have had. They said there are a couple lymph nodes they want to keep an eye on. And after that they told me that they wanted me to get in touch with the head and neck oncologist. They feel I should further my treatment with them. I said, "Wait, you're saying that you think I should look into chemo?" And their answer was, yes. In my head at this point, I'm like, are you freakin kidding me!! I thought we were gonna come down for the scan and then hear, "Things look good, go home and heal and we will see you back in 3 or 4 months for another scan." Wrong.
We set up my next scan with them for the end of January and off we went. Not even ten minutes into the car ride home I had a call from my nurse and she had asked if we left the hospital yet. They spotted something in my temporal area and they wanted me to get a CT scan so they can have a better look at it. I had told her we were already headed home and I wanted to make it back for my sons last football game. We then decided that I would get the scan done at home and have it sent down to them. The doctors also decided that the end of January was too far away for the next scan and bumped it up to the beginning of January instead. GEEZE! None of this makes me feel too confident.
A few days after being home I had heard from my nurse many times, just getting my info and checking in to see if I had set up the scan. I did eventually and about a week after being home I had a call from Dr Taylor's office, head and neck oncology. The nurse was very nice and her name was Valerie! It was a Wednesday and she offered me a 9 oclock appointment that Friday, or a 2 oclock the next Friday. Being that it is hard to drop everything and go, I picked the latter one.
My mom and I had just been there the week before, so I told her I will see about bringing a friend with me this time so she doesn't need to go! My friend Stacy had been with me from the beginning and she is an easy person to travel with so I asked her and she was happy to come along! We left around 8 Friday morning and ended up getting there with over an hour to kill so we first ran into the beauty supply so I could grab some things for work and then we went to Chipotle to get some lunch. Both places are on the same road as the hospital along with our hotel.
When we got to the hospital we went up to the 9 floor. I can't remember if I had been in this office before or not. I did see Dr Howard, an oncologist there the first time so I think I may have been up there once but I don't remember. We were brought back to a room right away, but then waited almost an hour before seeing the doctor. I had read reviews on him and a lot of people first mentioned how amazing and great he is, and then said that they waited a long time in the office. So at least we were prepared for it! Once he came in though, he spent a lot of time with us. He had my files, which were inches thick! (I suppose that isn't surprising!) The nurses and anyone who popped in also mentioned that they recognized my name due to everything I have had done at that hospital. First thing he had me do was start at the very beginning and tell him everything. He wrote it down in his own notes and asked questions along the way. He also pulled up scans from previous surgeries as I was talking about it.
He explained that there are two small cancer areas in my temporal region. One is near my ear canal and the other is up a little higher. I am unsure if these were left from surgery, or if they are new growths since my last MRI.
After that was all said and done, he explained that they are going to take tumor samples they have from my previous surgery and run 4 tests on it in the hospital and send some more out for extensive testing. The tumor is being tested with different kinds of chemos and we will find out if the tumor responds to any of them. He explained that this will take a few weeks to get answers. And I told him I was good with that because I'd really like my mouth to be feeling better and get a little weight on before starting chemotherapy. Plus, it gives me time to prep and prepare myself for another round of chemo! He said that he doesn't see a problem with me being able to get the chemo done here at our hospital. I really like the idea of that - Milwaukee can still call the shots, but it gets carried out here. Less travel, especially now that winter is upon us, will be good.
That brings us to the present. I am not sure how I feel about it all. Chemo wasn't the worst thing in the world for me last time. I didn't enjoy anything about it, but radiation ended up being much worse for me. With chemo, I would feel bad for a handful of days after getting it, but then I'd feel good again for a little while until the next round. With radiation, there was no good days. It just got worse and worse every single day. The thought of doing chemo again doesn't scare me, do I like the idea of possibly losing my hair again?! No. I finally have hair that I can throw in a ponytail or do whatever with. Am I ready to lose it again, absolutely not. But, every chemo is different. There are hundreds of chemos out there. Some are IV's, some are pills. Some you lose hair on, some you don't. Some you can take at home, others in the hospital. Some you take daily, some are once a week. So it will all depend on what concoction I end up with. There is this new thing out there called a 'cold cap'. You wear these cold hats on your head while you are getting treatment and it is supposed to help keep your hair. The hat has to stay under a certain temperature the entire time though, so you have multiple hats on dry ice in a cooler, and you keep switching out the hats. What I have read from reviews is, that most people's hair gets thinner but they didn't lose it. I think it might be worth a try! Cold has some sort of affect on chemo because last time that I got it, I was supposed to suck on ice chips as I got treatment and that would help my mouth from forming sores.
So now we are back to the waiting game. Like I said, I am in no rush to get started with this. And in 1.5 weeks a couple friends and I are heading to Vegas. It was supposed to be a trip to celebrate being done with everything but now it has turned into a trip to have one last 'hurrah' before going back in for more treatment.
It is what it is...I guess I am a bit numb to this new news still. I don't really have a lot of feelings for what is going on right now. I thought I was going to be done, and I am not. I thought it was finally time to heal, and now it isn't. It is disappointing. And tiring...... 3.5 years I have been in this battle. I am lucky I had a break during the middle of it and I hope that I soon can have a break from it again. Could chemo be the last step in this round of fighting?
We will see what the future brings.
Tuesday, July 18, 2017
7 weeks out and gearing up for radiation july 18, 2017
Hello! Radiation is taking longer to get started then we expected. My Marquette radiation oncologist was out of town so things got backed up but we now have the ball rollin!
I went down 3 weeks ago and met with a nurse and went over my health history, I watched a movie about radiation and she explained everything we were going to do. Then the doctor came in and we had a little chat. His name is Dr Baer and he was very nice!
The next weekend was the 4th of July and I had all kinds of family in town. It was so nice to be able to see everyone and get together! Some days I needed to sneak away for a little nap and then come back to all the action. Luckily the weather held out for everyone!
Dr Baer had told me that I need to see the dentist first because the radiation is going into my jaw area so it can affect my mouth and everything needs to be in prime shape before we start. I was told that after a couple weeks of radiation I will see a pink burn (like a sunburn) on my cheek and it will get brighter as radiation goes on and a few weeks after it is over it should go away. Because of this I need to use a certain soap to wash my face and be very careful about putting any chemicals on it. I also need to use baby shampoo to wash my hair too. Nothing with chemicals there either. And also no sun on my face! I already wear a hat outside so that is no problem. I will probably develop mouth sores which I dread because that was a problem for me when I went through chemo and it is very hard to deal with! I will probably get tired over time but I won't be sick feeling from the radiation. I am also able to drive myself to and from if I want.
That Friday the kids, my brother Kent and my parents went to Mackinac Island for the weekend. We were supposed to go the first weekend of June and it was to celebrate my parents 35 anniversary but one of my surgeries pushed it off. We all had a great time and it was a nice get away! Our weather was amazing and it all worked out perfectly!
The next Tuesday I had my dentist appointment and then Wednesday I went back down to Marquette to meet with the technician who was doing the mask. She explained that making the mask would be about 45 minutes, she showed me the waiting room and the area to change into my gown. Every appointment for radiation I will go in there, change into the gown and then they will bring me back. I should be in and out of the hospital in about 30 minutes total. She explained that when we make the mask I will be on a table, the mask will get made and then I will go through the CT machine. Once everything is done, the 'planning' starts. About 10 days after I will begin radiation.
On Monday, I went back down to Marquette and had the mask made. I changed into the gown and the girls brought me back right away. They had my lay on the table and made sure I was perfectly straight. No legs crossed, arms directly at my sides. My head was resting on this little stand and she tucked my hair underneath me. She put a pillow under my legs and then we waited for the mask to finish heating up. The mask is going to go to the middle of my chest. This way I don't move my neck around at all while getting the treatment. Once the mask was heated up, 3 girls worked together to get it on me. One was holding my hair down, and the other two were on each side of me holding ends of the mask. They pulled it down over me and snapped it into place around my head on the table I was laying on. The mask at first is warm, gooey and kind of wet feeling. One of the girls then makes sure it is forming to my face. She would softly push on areas around my face like my nose, chin, my neck, the shoulder area to help it mold to me. The mask has little holes all over it so you can breath through it no problem. Your mouth is closed, but not clenched shut. Your eyes are closed too. This was probably on for a good half hour to make sure it was completely cooled. She marked areas on the mask and put little pieces of tape on it too. She took many pictures also. Even of where my hands were positioned on the table. This is the exact position I will be laying in every day. Then it was time for the CT scan. This is the scan that they use to map out the exact route they are going to take with radiation. I met the girl who does the mapping - or planning, as I had said before. This takes them a few days to figure out and then it is time to get started. Once the CT was done, they removed the mask. She said it can kind of feel like it is stuck to your skin as they pull it off but we didn't have any problems with it. The only thing uncomfortable for me was my left jaw. The mask pushes my jaw in a little and after being like that for so many minutes it was sore. The right jaw is made of titanium so I didn't have any problems on that side.
So now we are back to the waiting game. The technician had said on average, long average, it's ten days before we start, which puts us at the middle of next week. I will get a call probably just the day before I need to be there for it. I am hoping to get my appointment time around 10:30/11. That way I can leave here around 8:30/9, get there, have the scan, and be home around 1/1:30. Then we still have the rest of our day to do what we want. I am at the bottom of the totem pole though so at first my appointments will be whenever they have an opening and as people finish and I climb my way up, I will get closer to the time that I want. Every Friday we plan out the next weeks schedule and on every Tuesday I meet with Dr Baer. Some days I will bring the kids with me and we can make a day of it, other days, when they are with their dad, I may stay down there with my sis-in-law to be.
Overall, things are going good. I can tell that I am getting more and more energy back. I have been able to get out and do some fun things! And my face is continuing to make improvements. I still need to use a straw with everything and eating certain foods is hard to do. I have zero movement in my bottom right lip but the muscles around it help to make it move for smiling. The right eyebrow isn't moving at all yet either. But we will just keep hoping for improvement!
The incision is doing good, I have no problems with it except for the neck area. A lot of the time it feels super tight and the only position that feels good is to have my head straight forward. The good news is, I can finally sleep on the bad ear! It doesn't feel normal, but it is now doable at night. I have no hearing in that ear yet, and it is still draining. I think I need to go see an ENT to make sure the tube is where it is supposed to be. My right nostril has a little bit of movement to it now, and my right eye closes all they way. It moves slower then the other and I continue to deal with water not draining properly out of that eye, so it still gets blurry but I am just happy that it is closing. Baby steps right!
I am grateful to be where I am in recovery. It has been a slow process but I am trying to be patient. I found a photo in my phone of me the day I was going in to get the fiducials put on. (Right before the May 1st surgery.) I am being silly because I know I am about to go get these stickers put all over me. I look at my mouth and the way I have it open and I wonder if I will ever be able to do that again. I know its just a silly face, but it is the full blown, teeth smile that I am missing. I let myself smile with my mouth open now but unless it's a picture taken far away, I don't like it. It is not my normal, and I just wish it could go back to that. (This brings us back to the comment I have made before that what was once your normal, is no longer normal.) I can't even look normal when I talk. All because that bottom lip doesn't move right. Everything is moving on the left side but not so much on the right. And I know, I am probably being hard on myself, but that is what everyone does right! I have my days that I just don't care what it looks like and then I have days that I am pretty self conscious about it.
I have just been enjoying family time and taking it easy. The kids and I have had a decent amount of days out in Twin Lakes and enjoying the nice weather when we have it! I know the drive to and from Marquette is going to get old, because it already is. But, it's a step in the direction of living a long and healthy life.
I went down 3 weeks ago and met with a nurse and went over my health history, I watched a movie about radiation and she explained everything we were going to do. Then the doctor came in and we had a little chat. His name is Dr Baer and he was very nice!
The next weekend was the 4th of July and I had all kinds of family in town. It was so nice to be able to see everyone and get together! Some days I needed to sneak away for a little nap and then come back to all the action. Luckily the weather held out for everyone!
Dr Baer had told me that I need to see the dentist first because the radiation is going into my jaw area so it can affect my mouth and everything needs to be in prime shape before we start. I was told that after a couple weeks of radiation I will see a pink burn (like a sunburn) on my cheek and it will get brighter as radiation goes on and a few weeks after it is over it should go away. Because of this I need to use a certain soap to wash my face and be very careful about putting any chemicals on it. I also need to use baby shampoo to wash my hair too. Nothing with chemicals there either. And also no sun on my face! I already wear a hat outside so that is no problem. I will probably develop mouth sores which I dread because that was a problem for me when I went through chemo and it is very hard to deal with! I will probably get tired over time but I won't be sick feeling from the radiation. I am also able to drive myself to and from if I want.
That Friday the kids, my brother Kent and my parents went to Mackinac Island for the weekend. We were supposed to go the first weekend of June and it was to celebrate my parents 35 anniversary but one of my surgeries pushed it off. We all had a great time and it was a nice get away! Our weather was amazing and it all worked out perfectly!
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| As you can see I am smiling with my teeth but it is not even. |
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| Love my family |
The next Tuesday I had my dentist appointment and then Wednesday I went back down to Marquette to meet with the technician who was doing the mask. She explained that making the mask would be about 45 minutes, she showed me the waiting room and the area to change into my gown. Every appointment for radiation I will go in there, change into the gown and then they will bring me back. I should be in and out of the hospital in about 30 minutes total. She explained that when we make the mask I will be on a table, the mask will get made and then I will go through the CT machine. Once everything is done, the 'planning' starts. About 10 days after I will begin radiation.
On Monday, I went back down to Marquette and had the mask made. I changed into the gown and the girls brought me back right away. They had my lay on the table and made sure I was perfectly straight. No legs crossed, arms directly at my sides. My head was resting on this little stand and she tucked my hair underneath me. She put a pillow under my legs and then we waited for the mask to finish heating up. The mask is going to go to the middle of my chest. This way I don't move my neck around at all while getting the treatment. Once the mask was heated up, 3 girls worked together to get it on me. One was holding my hair down, and the other two were on each side of me holding ends of the mask. They pulled it down over me and snapped it into place around my head on the table I was laying on. The mask at first is warm, gooey and kind of wet feeling. One of the girls then makes sure it is forming to my face. She would softly push on areas around my face like my nose, chin, my neck, the shoulder area to help it mold to me. The mask has little holes all over it so you can breath through it no problem. Your mouth is closed, but not clenched shut. Your eyes are closed too. This was probably on for a good half hour to make sure it was completely cooled. She marked areas on the mask and put little pieces of tape on it too. She took many pictures also. Even of where my hands were positioned on the table. This is the exact position I will be laying in every day. Then it was time for the CT scan. This is the scan that they use to map out the exact route they are going to take with radiation. I met the girl who does the mapping - or planning, as I had said before. This takes them a few days to figure out and then it is time to get started. Once the CT was done, they removed the mask. She said it can kind of feel like it is stuck to your skin as they pull it off but we didn't have any problems with it. The only thing uncomfortable for me was my left jaw. The mask pushes my jaw in a little and after being like that for so many minutes it was sore. The right jaw is made of titanium so I didn't have any problems on that side.
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| The table I laid on to get the mask made and the CT scan. |
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| Always gotta do a gown photo! |
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| This is obviously not me, haha, but this is exactly what my mask looks like. And you can see it is pinned to the table. |
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| They are kind of hard to see in this little picture but I have an imprint from the mask on my face.I forgot I had it and went into the beauty supply afterwards. I wonder if they noticed! |
So now we are back to the waiting game. The technician had said on average, long average, it's ten days before we start, which puts us at the middle of next week. I will get a call probably just the day before I need to be there for it. I am hoping to get my appointment time around 10:30/11. That way I can leave here around 8:30/9, get there, have the scan, and be home around 1/1:30. Then we still have the rest of our day to do what we want. I am at the bottom of the totem pole though so at first my appointments will be whenever they have an opening and as people finish and I climb my way up, I will get closer to the time that I want. Every Friday we plan out the next weeks schedule and on every Tuesday I meet with Dr Baer. Some days I will bring the kids with me and we can make a day of it, other days, when they are with their dad, I may stay down there with my sis-in-law to be.
Overall, things are going good. I can tell that I am getting more and more energy back. I have been able to get out and do some fun things! And my face is continuing to make improvements. I still need to use a straw with everything and eating certain foods is hard to do. I have zero movement in my bottom right lip but the muscles around it help to make it move for smiling. The right eyebrow isn't moving at all yet either. But we will just keep hoping for improvement!
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| Trying to smile with my teeth. It is getting there, but not to my likings quite yet! |
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| Still no puckering my lips |
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| Got the closed mouth smile down though! |
I am grateful to be where I am in recovery. It has been a slow process but I am trying to be patient. I found a photo in my phone of me the day I was going in to get the fiducials put on. (Right before the May 1st surgery.) I am being silly because I know I am about to go get these stickers put all over me. I look at my mouth and the way I have it open and I wonder if I will ever be able to do that again. I know its just a silly face, but it is the full blown, teeth smile that I am missing. I let myself smile with my mouth open now but unless it's a picture taken far away, I don't like it. It is not my normal, and I just wish it could go back to that. (This brings us back to the comment I have made before that what was once your normal, is no longer normal.) I can't even look normal when I talk. All because that bottom lip doesn't move right. Everything is moving on the left side but not so much on the right. And I know, I am probably being hard on myself, but that is what everyone does right! I have my days that I just don't care what it looks like and then I have days that I am pretty self conscious about it.
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| The photo of me goofing around before the fiducials went on. |
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| I'm trying very hard to open my mouth the exact same way as the picture above. |
Monday, May 29, 2017
Two days before my next surgery - May 29, 2017
Tomorrow I leave for my next surgery. I need to pack for the kids and I still but with the last surgery being so close, I think it'll be pretty easy to remember what to pack. Some bags didn't even get unpacked! And last time I packed everything that I needed - there wasn't anything that I wish I had brought but didn't. So now, I just have to remember to pack the same things as I did last! Haha
I am not sure how I feel about having this surgery. Part of me is ready to get it done and hopefully not have to worry about surgery again for a LONG time. I've become very used to hospital stays and recoveries so I don't mind that I have to have another. But, then the other part of me, wishes I didn't need to go in for another surgery. I wish I could just keep the healing process going. This means I will be taking a few steps backwards..
I am definitely not healed but I can camouflage it to a point now. My incision is looking great and the pain is going down. The swelling is a lot less. My cheek is a drop puffy still but my doctor said it is going to look a little "chubby" for a while until the muscle settles into its spot.
My eye still does not close and that is hard to deal with. It is blurry all the time. It makes a lot of things difficult! Driving, reading, watching a show and just looking around! I am constantly trying to clear it but it's impossible to do since it doesn't close. I have to be very careful wiping it also because I might scratch it. And looking at me, you can see when I blink that that eye is slow and does not close all the way. I am very self conscious about closing my eyes! Sometimes I forget that it doesn't close all the way and people can see it isn't closed even though my eyes both feel closed to me. I had a massage the other week and I kept my eyes open the whole time. Haha. I wasn't gonna lay there with one eye open.
I have a lot of 'nerve pain' on my neck and chin. It feels more like pins and needles but it's a constant feeling. Last time I was on a medication that helped with the nerve pain but I have decided to try and go without it this time. It is a very hard med to ween off of and I don't want to deal with that again.
The incision on my neck is tight. Every time that I turn I can feel it pulling and if I keep moving my head too much it gets sore. I can't have anything touching it either or it starts to hurt and feel uncomfortable. A t-shirt even bothers it. So I usually always have a tank top on.
And then there is the right side of my face. I can move my cheek a LITTLE bit! That is the first progress of movement I have seen. It started about a week ago (two weeks out of surgery), and it moves a bit more now than it did then. No eyebrow or lips moving yet. If I make a small smile with my mouth closed, the right side moves up a little. I am not sure if it is the lip muscle moving or the cheek muscle that is pulling it up. If I pucker my lips, or try to smile, it doesn't work yet. And that is the only movement I've got at this moment.
The two things that I wish most, is that my eye would start closing and that my lips would start working. Out of those two, I'd pick my lips. I still need to use a straw to drink. And I need a fork for anything I eat. I tried to eat a piece of pizza the other night without one and I bit my lip pretty hard. So back to the fork I went! A few days later I tried to eat a burger and bit my lip again. Giving up on that for a little while! I'll stick to the fork. I am starting to talk better, the first few weeks, some words were hard to get out because I couldn't get my lips to help me pronounce them right. Smiling is another problem. I can't do it and look normal. If I do try to, I use one hand to cover the side that isn't smiling! ugh.
I did a lot of sleeping in the first two weeks. Now, I am having a problem falling asleep at night. So it is late when I do and then I want to be sleeping in. Some days I take a nap and others I don't. But now when I do, I make sure it is earlier in the day so maybe I can fall asleep at a decent time. I know going in for this next surgery I will be back to sleeping a lot so I won't have to deal with the sleep problems for a few weeks again.
I have gone out in public a few times. It feels good to get makeup on and get out of the house, but I can only handle a few hours at a time. My body is tired and my neck is usually hurting after that. I end up doing a lot of talking with people which gets hard for my mouth, and I seem to move around to the point that my neck gets sore. And, it isn't warm here yet so I have a jacket on and that is rubbing on my neck! Not to mention that just standing anywhere for a little while is tiring for me. Now is when I would start doing yoga, or being more active around the house to try and work up some energy but with surgery around the corner I really don't see the point.
My ear is still a problem too. I don't mind that the whole thing is numb, but it feels heavy on my head. And it is still completely blocked. No hearing out of it what so ever. I think overtime the hearing should still improve. Sleeping on that ear feels very strange too so I usually stay away from that side.
What I have heard about this next surgery, it sounds like Dr Kassam doesn't need to open my neck up again. That is a relief for me. The head surgeries are easier to recover from. I hope that going in for this surgery, doesn't bring all of these healing nerves back to the beginning of the healing stage. This neck surgery is by far worse then the other surgeries. (Minus the infection surgery).
In a previous post I had brought up that the corner of the titanium plate behind my ear hurts. Since I will be opened up for surgery anyway, I'm going to ask my doctor if he can fix that area. I think if the corner is bent in a little, cut off or just filed down - the pain would go away. Sounds like a simple fix to me, right!?! It still hurts to sleep on that side, wear a hat or headband.
My parents and I will head down Tuesday morning and at 4PM that day I have a CT with the fiducials again. And then Wednesday morning I need to be at the hospital for 5AM and surgery is 6:30. Same as the last one which the time worked out perfect for me. I like going in so early, I don't have to sit around at all waiting until its time to get to the hospital. I feel like the prep time flies by and before I know it, I am in the operating room and going into lala land!
My cousins Ali and Maren have set up a meal delivery for me. It is very convenient the first few weeks out of surgery. The site is called Take them a meal (.com) and the password is 0521. I had to make very few grocery runs (usually had someone else run for me since I can't drive for a few weeks after surgery) and I had to put zero thought into what I was feeding the kids! It was super nice and made things a lot easier for me! I would have the table set and the food ready to go when the kids got home off the bus. We would eat right away and talk about their day. It was great!
My birthday was a week ago, I wasn't up for going out to dinner but we went to my parents and ordered pizza. It was prefect and all that I needed this year!
The past few days have been a little rough for me. I am prepared for surgery and all. I know I need to go in again and then that is it for a while. (We hope). But I am just struggling with this slow recovery process. The facial nerves that don't move at all are an adjustment. I am a patient person but this takes SO much patience! In a week, the improvement I see is very little. The thought of going back to work and struggling to have a conversation with my clients isn't appealing. The energy that I don't have is hard too. How am I going to stand all day?!? I know I will start out with just a few hours a day, a few days a week. But it still seems a bit overwhelming. And when I am tried, the muscles in my face slack even more and it makes my mouth and eye more obvious that they aren't working right. I did take another 6 weeks off from work for this surgery so hopefully by the end of that, I am feeling up to it!
And that sums up the recovery process so far! Tomorrow we are onto the next Milwaukee run. Hopefully I am gone just about a week. And then it is officially time to heal, heal, heal!
I am not sure how I feel about having this surgery. Part of me is ready to get it done and hopefully not have to worry about surgery again for a LONG time. I've become very used to hospital stays and recoveries so I don't mind that I have to have another. But, then the other part of me, wishes I didn't need to go in for another surgery. I wish I could just keep the healing process going. This means I will be taking a few steps backwards..
I am definitely not healed but I can camouflage it to a point now. My incision is looking great and the pain is going down. The swelling is a lot less. My cheek is a drop puffy still but my doctor said it is going to look a little "chubby" for a while until the muscle settles into its spot.
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| One of the few times I left home |
My eye still does not close and that is hard to deal with. It is blurry all the time. It makes a lot of things difficult! Driving, reading, watching a show and just looking around! I am constantly trying to clear it but it's impossible to do since it doesn't close. I have to be very careful wiping it also because I might scratch it. And looking at me, you can see when I blink that that eye is slow and does not close all the way. I am very self conscious about closing my eyes! Sometimes I forget that it doesn't close all the way and people can see it isn't closed even though my eyes both feel closed to me. I had a massage the other week and I kept my eyes open the whole time. Haha. I wasn't gonna lay there with one eye open.
I have a lot of 'nerve pain' on my neck and chin. It feels more like pins and needles but it's a constant feeling. Last time I was on a medication that helped with the nerve pain but I have decided to try and go without it this time. It is a very hard med to ween off of and I don't want to deal with that again.
The incision on my neck is tight. Every time that I turn I can feel it pulling and if I keep moving my head too much it gets sore. I can't have anything touching it either or it starts to hurt and feel uncomfortable. A t-shirt even bothers it. So I usually always have a tank top on.
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| What a difference two weeks can make! |
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| Scabs are gone! |
And then there is the right side of my face. I can move my cheek a LITTLE bit! That is the first progress of movement I have seen. It started about a week ago (two weeks out of surgery), and it moves a bit more now than it did then. No eyebrow or lips moving yet. If I make a small smile with my mouth closed, the right side moves up a little. I am not sure if it is the lip muscle moving or the cheek muscle that is pulling it up. If I pucker my lips, or try to smile, it doesn't work yet. And that is the only movement I've got at this moment.
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| Trying to pucker my lips. Right is doing nothing. As you can see the right eyebrow is down too. |
The two things that I wish most, is that my eye would start closing and that my lips would start working. Out of those two, I'd pick my lips. I still need to use a straw to drink. And I need a fork for anything I eat. I tried to eat a piece of pizza the other night without one and I bit my lip pretty hard. So back to the fork I went! A few days later I tried to eat a burger and bit my lip again. Giving up on that for a little while! I'll stick to the fork. I am starting to talk better, the first few weeks, some words were hard to get out because I couldn't get my lips to help me pronounce them right. Smiling is another problem. I can't do it and look normal. If I do try to, I use one hand to cover the side that isn't smiling! ugh.
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| Hiding the crooked smile. Haha |
I did a lot of sleeping in the first two weeks. Now, I am having a problem falling asleep at night. So it is late when I do and then I want to be sleeping in. Some days I take a nap and others I don't. But now when I do, I make sure it is earlier in the day so maybe I can fall asleep at a decent time. I know going in for this next surgery I will be back to sleeping a lot so I won't have to deal with the sleep problems for a few weeks again.
I have gone out in public a few times. It feels good to get makeup on and get out of the house, but I can only handle a few hours at a time. My body is tired and my neck is usually hurting after that. I end up doing a lot of talking with people which gets hard for my mouth, and I seem to move around to the point that my neck gets sore. And, it isn't warm here yet so I have a jacket on and that is rubbing on my neck! Not to mention that just standing anywhere for a little while is tiring for me. Now is when I would start doing yoga, or being more active around the house to try and work up some energy but with surgery around the corner I really don't see the point.
My ear is still a problem too. I don't mind that the whole thing is numb, but it feels heavy on my head. And it is still completely blocked. No hearing out of it what so ever. I think overtime the hearing should still improve. Sleeping on that ear feels very strange too so I usually stay away from that side.
What I have heard about this next surgery, it sounds like Dr Kassam doesn't need to open my neck up again. That is a relief for me. The head surgeries are easier to recover from. I hope that going in for this surgery, doesn't bring all of these healing nerves back to the beginning of the healing stage. This neck surgery is by far worse then the other surgeries. (Minus the infection surgery).
In a previous post I had brought up that the corner of the titanium plate behind my ear hurts. Since I will be opened up for surgery anyway, I'm going to ask my doctor if he can fix that area. I think if the corner is bent in a little, cut off or just filed down - the pain would go away. Sounds like a simple fix to me, right!?! It still hurts to sleep on that side, wear a hat or headband.
My parents and I will head down Tuesday morning and at 4PM that day I have a CT with the fiducials again. And then Wednesday morning I need to be at the hospital for 5AM and surgery is 6:30. Same as the last one which the time worked out perfect for me. I like going in so early, I don't have to sit around at all waiting until its time to get to the hospital. I feel like the prep time flies by and before I know it, I am in the operating room and going into lala land!
My cousins Ali and Maren have set up a meal delivery for me. It is very convenient the first few weeks out of surgery. The site is called Take them a meal (.com) and the password is 0521. I had to make very few grocery runs (usually had someone else run for me since I can't drive for a few weeks after surgery) and I had to put zero thought into what I was feeding the kids! It was super nice and made things a lot easier for me! I would have the table set and the food ready to go when the kids got home off the bus. We would eat right away and talk about their day. It was great!
My birthday was a week ago, I wasn't up for going out to dinner but we went to my parents and ordered pizza. It was prefect and all that I needed this year!
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| Birthday Dinner |
The past few days have been a little rough for me. I am prepared for surgery and all. I know I need to go in again and then that is it for a while. (We hope). But I am just struggling with this slow recovery process. The facial nerves that don't move at all are an adjustment. I am a patient person but this takes SO much patience! In a week, the improvement I see is very little. The thought of going back to work and struggling to have a conversation with my clients isn't appealing. The energy that I don't have is hard too. How am I going to stand all day?!? I know I will start out with just a few hours a day, a few days a week. But it still seems a bit overwhelming. And when I am tried, the muscles in my face slack even more and it makes my mouth and eye more obvious that they aren't working right. I did take another 6 weeks off from work for this surgery so hopefully by the end of that, I am feeling up to it!
And that sums up the recovery process so far! Tomorrow we are onto the next Milwaukee run. Hopefully I am gone just about a week. And then it is officially time to heal, heal, heal!
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