A week out of surgery & some very UNEXPECTED news! May 11, 2017

Alright! So all is going pretty well! The healing process is much different this time around because I have not had to deal with my neck being opened up too. It is very tender and stiff. I can't turn my head very far. The area around the incision hurts quite a bit! I just spent my first full day home, and now it's late at night and as I type this up, my kids are sound asleep on my floor. :)

I was standing outside when they walked down the road after getting off the bus. I was doing a little dance for them. Haha. Shay came running up and gave me a big hug, and eventually Rease got to me and we had a big hug too! You could see the concern in their face as they looked at me. The swelling, the right side not moving at all and of course the incision area. It's all pretty scary - for anyone to look at, but especially kids. I just reassured them that eventually a lot of this is going to get better. It just takes time. The last time I looked like this I was in the hospital for 6 weeks. So by the time I got home to my kids, my swelling was down a ton! Rease asked if I was joking about the right side not moving. I said, "No baby, that side really isn't moving. I wish it were a joke."  :(  I HATE that they have to go through this. I hate that I have to leave them for these long lengths. I hate that they have to see me in horrible conditions. I don't want them to be worried or feel sad for me. I am still the same person, I just look different right now. And no, maybe the right side, especially my lip, will never move. But eventually they will get used to that, because it will be my new 'normal'. But they are just kids and the last thing they should have to be dealing with is their Mom having cancer. It makes me mad, and sad for them. They have a fear in them that kids shouldn't have to feel at such a young age.

The days leading up to my appointment yesterday were spent at Peggy's house. I literally slept, ate and watched shows. Peggy and Randy were great hosts, and my Mom was amazing at being there for me whenever I needed her. She checked on me MANY times a day! One day they needed to run somewhere for ten minutes and I would be home alone, she panicked. Other then that, someone was always at the house with me. She didn't feel comfortable with me being left alone.  I can only eat soft things still, but all I ate were healthy things the entire time. It is so easy to healthy when you've got someone cooking for you! Anyone wanna to be my chef?!?

6 days out of surgery and I finally worked up the energy to shower. I used the baby shampoo and snuck a little conditioner on the very back, nowhere near the incision. It definitely felt good to take a shower, but it takes SO much out of you after a surgery! It's crazy.

My brother Brendan did come and stay with us one night. It was so nice to see him and just hangout and talk. He was heading home from college and took a completely different route home so he could see my Mom and I for the night. He is now heading out to North Dakota for the summer to work.  Yesterday he ran and got groceries for me and then dropped them at my house so the kids and I got to see him one last time before he left!

My last night there, my Mom woke me from a nap and a minute later my brother Kent came busting through the door! I was so surprised to see him! I had another good night of hanging with my bro. He is heading to DC for a work thing for the next week, so it was good to have some time with him too!

A lot of my little scabs and bruising have left. Every shower I take, the incision looks cleaner. I scrubbed off all the sticky tape I had all over me. So now I'm lookin pretty clean! My eye is still bothering me a lot but that is because it is not closing all the way still. It is constantly blurry. sometimes stinging because its dry, and other times it is tearing up.  Once that nerve starts healing, the eye will start working better. The movement on my right side still is not there. Waiting for the nerves to heal can actually take months. 12-18 months before full recovery. Anything left after that, that is still numb or not working right, will probably never be any better then where it is. My ear is still draining blood. Every morning I wake there is new blood in it. I was happy to get to my doctors appointment and make sure it was all normal. I had been taking my temperature many times a day too, to make sure that was normal. The last time I had an infection, my temp was high.

Cleaned up after a shower,
healing is happeneing.

So Tuesday finally came! We packed up all of our gear. I did my makeup and hair for the first time in over a week and put on clothes other then shorts and a tank top!  I sat in bed and did my hair and makeup, but I was still exhausted from doing that. I could tell it was going to be a looooong day! I had a doctors appointment with Dr Corsten and then with Dr Kassam. And if all looked good, my Mom and I would be heading home after!

Felt good to put clothes and
makeup on. Hid the swelling
and stitches well!

My first appointment was with Dr Corsten.

Everything looked great. He told us again that he tested the margins around where the tumor was,  and everything looked clear.  The blood in my ear is normal, he said it is just fluids draining from the inside still. I can not hear out of that ear at all, it feels blocked and that is normal too.  The muscle that they flipped in my neck to fill in a space on my face is called the sternocleidomastoid muscle. It is the big one you see that sticks out in the front of your neck. It is attached to the collarbone and the breastbone, meets together and is attached right behind the ear. This muscle helps to turn your head. I may always have some stiffness on that side, but other muscles should help do the work as everything heals. This explains why I feel sore on my color bone and I have a bit of a sore throat on the right side, it is from the muscle being removed also.  The area on my neck between the stitches and my jaw bone is very hard! He said that is normal, and will soften some over time but it will always be on the harder side.  My incision looked good and he wanted to take those stitches out. Really?! Dr Kassam said two weeks! Dr Corsten said, the neck stitches are his! Dr Kassam can keep the head stitches in as long as he wants! Sounds good to me. The sooner the stitches are out, the less pain for me. Like I have said before, I heal quickly and the longer the stitches are in, the deeper they are because skin starts growing around them and the more digging the nurses have to do to get them out.

The neck muscle that was removed.

I also talked to Dr Corsten about him leaving. In Milwaukee he runs the Head and Neck Cancer unit. Texas offered him a job of being in charge of the ENTIRE cancer unit. Well, that sure would be hard to pass up! Plus, his wife loves the idea of warm weather! He is done at the end of this month, but will probably be around the few months after that, until the next doctor who will take his place gets here. I told him I am sad that he is leaving, but also very happy for him. I love him! He is my Dr that gives me every juicy detail of what they did to me during surgery. And almost every bit of reconstruction that I have had done on my face, were done by him. We started to say our goodbye, but then decided not to because we will probably see each other at least once more!

Once he left the room his nurses removed the stitches. I was nervous about this because my neck is still sore and its not numb like my head! I had a feeling I was going to feel a lot of what was going on. In the end, it wasn't so bad! I felt some of it, but it all ran pretty smooth! What a relief!

Neck stitches are out!

Now onto Dr Kassam. This is where things get crazy.

We had to wait a while to see him and at one point, a worker of his came in with a basket full of snacks. She said Dr Kassam is still with another patient, but he really wants to see you. Here is a snack to keep you busy! Haha.

Eventually he came in with a couple nurses, my radiologist Dr Fukui, and Dr Rovin! (Dr Rovin is my doctor who directed me to Dr Kassam, came from Marquette and also put my plate in.) Dr Fukui pulled up the MRI I had done the night of surgery. She showed us were the tumor was, and now how it looks without it. I also got a good picture of my profile and you can see the titanium plate really well. Dr Kassam said everything went really great and he was very happy with the outcome. He started to do some explaining about this surgery and prior ones to a different doctor in the room. I got some info out of it and others flew right over my head! The ramus is part of the jaw bone and that piece came completely out. He explained to him that my cancer is so rare, they don't even have a name for it. He said there are 5 people in the WORLD that have what I do. Now, if I am gonna be this 'lucky', couldn't it have been by winning the lotto or something?!?! He also said he believes that if we stay on top of this cancer like we have been, we can keep it under control.

The ramus

See the square design on my skull?
That is the titanium plate.

Now read this part carefully.
He said we got 90% of it. What?! 90%? But Dr Corsten just told us everything was clear! He explained that there is a little mass still in there and he said we don't want to do chemotherapy because last time it grew while on it, and then he started talking about radiation. I don't know if I was in my own world for a minute or if I didn't understand what was being said but the last thing I heard was that he would like to go in. I said, "Wait, you want to go in with radiation next?" I liked that idea, because I knew radiation had worked before. Then, He said, "No, I'd like to go in for surgery and remove that mass. Then we can talk radiation." OMG. Totally not expected. None of us - my Mom, Aunt Liza and I never expected to hear that so soon!  Dr Kassam said he could do the surgery as soon as the end of the week. He will clear his schedule for me. Or, we can wait a few weeks.

So, from what I understand, there was one big tumor. But a little piece of it, was separated by tissue. And that tissue was not visible on the MRI. When they went in and removed the tumor, they did just that. The whole area was clear. Little did they know, a little chunk of it, was completely separated by tissue. So that was not seen during surgery and not removed. It is too big to just radiate. The chance of it growing would be high. So what makes the most sense is to go back in and get it out. If we feel the need for radiation afterwards, then we will.

The bigger circle is where the tumor was.
That is completely gone! The small
circle, is the little spot we are going
back in for.

I honestly, was fine with this. I'm fine with having surgery. I still prefer it over chemo. We went over the pros and cons of when to have the next surgery. Cons of if we do it now, it may disrupt the nerves that are trying to heal. If we do it in a few weeks, I have to start at square one of healing process again. Pros - if we do the surgery now, I'm still in the early stages of healing and we can get it over with. Waiting a few weeks, I have time to recover from this one, not worsen the nerves and I get to go home to my kids. They were counting on me being back home. Shay and I had a countdown going.  So, I chose the latter one. We will do surgery in a few weeks.  I had said I preferred the first full week in June, because the weekend before my family has plans to go to Mackinac Island for my parents anniversary. I am missing my Best Friends wedding in Vegas this weekend (should be packed and leaving today), I don't want the Mackinac trip canceled too. But of course I said if the week before works better, obviously we can do it then. Since then though, my parents have decided that we will probably postpone Mackinac Island to later in the summer. That is fine with me as long as we do go! My 3 favorite places to visit are South Beach, Vegas and Mackinac Island. I felt so lucky that this year I was making it to all 3! And now this damn cancer ruined one of those trips. I would hate if it had to ruin another.

After all of that talking was done, Dr Kassam had his Neuro-Ophthalmology doctor come in to test my eye. Dr Kassam wanted to make sure that my eye wasn't going to get ruined over time as we wait for the nerve to start working and allowing my eye to close all the way. He looked at it and we did some reading tests. Then he put some drops in that turned my eye yellow and he could tell if there were any areas that were dry. Everything looked good though! And even though the eye doesn't want to close all the way, it is closing enough to keep it lubricated.

Creepy yellow eye.

Then, I got the rest of my stitches out! His nurse practitioner first asked if I had a doctor here at home who could take them out. Then, she took a closer look at them. I told her I usually heal fast. She agreed and said it looks great. And then decided she would take them all out right then and there. Score! All the stitches will be out which means I don't need to come back in a week! These stitches were painless. Didn't feel a thing as they came out. I was thrilled to be done with that and now we get to head home and stay there until surgery! I will probably need to make one trip down before surgery for an MRI and whatever other tests they need done.

All the stitches are out!

My Mom and I got in the car to head home after this. She wanted to let a few F bombs fly (okay, maybe one did come out! Sorry Mom, I outed you!), but said since I am okay with going back into surgery, she needs to be okay with it too. It was 6:30 our time, getting kind of late. And I am not allowed to drive yet so my Mom had to do it all. She was a good sport, we got into town about 12:30 and she dropped me at my house. She wanted me to stay with her, she didn't like the idea of me going home to an empty house by myself. But I told her I would be just fine and I couldn't wait to get in my own bed! I did wake up once or twice early that next morning and text her just so she knew all was well.

My cousin Maren brought us dinner last night and that was perfect! I had nothing that I needed to do besides enjoy my kids. We watched some of our favorite shows, I painted Shaya's nails and just caught up on things! It was a great first night back with my babies. They each got lots of hugs!  And now, I am just going to relax, heal and wait for a call on my next surgery date.

These beautiful two. The reason I keep going.