Summer 2015 to October 2015...Lumbar Puncture. Skin Cancer. T-tube.

My summer was pretty uneventful. I recovered from my surgery very fast. I wore headbands and wraps every single day to cover where my hair had been shaved. It was slowly growing, though!

I had to go back in the beginning of June to have a test to make sure I didn't have a cerebral fluid leak. My nose was draining clear fluids and I also had a fluid spot of swelling on my right temple that came a few weeks after the surgery. A CSF leak is a leak of brain fluid coming from the dura layer of the brain. When the titanium went in, the dura may have been punctured and brain fluid leaking out.

For the test,  I was laying on my stomach on a table with an x-ray machine above me. I had a lumbar puncture done (needle in my spine) and a dye injected. The table was then tilted so my head was lower then my feet and some x-rays were taken to see where the dye was going. I had to stay in the hospital for a few hours after to make sure I wasn't reacting to having the lumbar puncture done.

Dr. Kassam and I

The next day, we were told that everything looked great! There was no leak and the swelling on my temple would eventually "soak up" and go away. I also asked while there about a pointy spot I had behind my ear. It hurt to the touch, hurt when I had a headband on and hurt to lay on! Turns out that is a corner of the titanium plate. Since all was good, we got to head home! I had to miss the kids last day of school during this stay.

On August 25, I was invited by my doctor to a fundraising dinner. He invited a few of his patients and another doctor, that was attending, did the same. They both were going to speak at it. It was a fun time! My Mom came with me, we got to dress up and eat some delicious food! My doctor ended up sitting at my table right next to me too. We got to make small talk, and he got to see me all dressed up with makeup on and my hair done. He has only seen me at my worst, or in a hospital gown! I was really happy that we got to go and lucked out that he sat next to me too.

In the beginning of September I had a little pink spot on my forehead just under my hairline looked at. I had it for over a  year now, and it wasn't going away. It was a bit raised and was shiny like a scar. This was the only thing on my body that reacted when I was getting chemo. It scabbed up, but then was back after the scab fell off. So, since the past crazy year was over, I decided to have it looked at. (Along with catching up at the dentist and eye doctors.)  My doctor sent me to a surgeon here in town. He removed it and had it tested. A week later, I came back to have the stitches out and sure enough, it was basil cell carcinoma! Are you kidding me? He said after everything I had been through, he wasn't going to go back and remove more. We are just going to watch the area and see if it grows back. Had I not had a brain tumor, this would have been a lot scarier to me then it was.

On September 15th, I had a check up. This included an MRI to check out how the titanium plate looked and to see if there has been any change to the area where a bit of tumor was left.

I also still had the fluid swelled area near my temple. I was getting really frustrated with this because I finally had a normal shaped head after hiding it for 6 months, but I still have this and I had to keep hiding it. They said they were going to take a look at it this time. I felt like it'd be so easy to put a needle in it and suck out the fluid. I'd joke that I was gonna take a knife, and put a little slit in it to drain it. (Yes, I was that DESPERATE!) I was also getting my port removed the next day if my MRI looked good. I was really excited about this whole appointment!

So, I had my MRI, walked the crosswalk over to my doctor's office, and waited a few minutes for him to come in. This is when I get nervous. My mom does her heavy breathing. Whatever my doctor has to say when he comes in can be a life changing thing for us! We finally feel like life is getting back on track. Things aren't 'normal,' but we are trying to make it that way.

Dr Kassam walked in, and instantly told us all looks great! His radiologist showed us the scan pictures and everything looked so good. The little area is still there, but no changes have happened.

Yippeeeee!

Chemo port is comin out tomorrow! Now, the swelling? Dr Rovin, who helped put the plate in, decided that we should do nothing to the fluid. Let it be. It will eventually go away on its own. This made me sad. I had tears in my eyes. My mom was talking for me saying its okay and we understand. I had a hard time understanding because I didn't want it there anymore! I'v'e hid things on my head for over a year now! I want to stop hiding!

Before it was removed and after

The next day, I came back to have my port out. It was exciting, but I was also kind of sad to see it go. The port saved me from having IV's so many times. My entire hospital stay, I had the port being used to pump meds or antibiotics.  I'd have even more IV's in my arm if it wasn't for that. It would be nice not having a bump on my chest where it was though. Shay would try to sit on my lap and I'd have to shift her all the time so she wasn't laying against my port. The port is a sign of having cancer, so it being removed, is a big step in the right direction.

I wasn't put out for this surgery. Just sedated a little and a lot of numbing shots and pain meds given to me through an IV as they removed it. I get nervous for the surgeries that I'm awake for! Luckily, I felt nothing after the numbing shots. I had internal stitches and a lot of glue on the outside. I could not pick the glue off. I needed to wait for it to go away on its own. Once the numbing wore off, it was a bit painful, but after a few days it was much better. Even now, when I push on the area where it was, it hurts a little, I'm not sure what the reason for that is. It was very discolored for a while but it's returning to a normal color now.

Now that that was all taken care of, I do not need to come back for an MRI for six months.

Six months!

I have 6 months of living 'normal' life. Whether the tumor is growing or not, I will have no idea. The sound of this is great! I am also allowed to slowly ween off of my medications now. The first time in 15 months I will not be on a pill every day.

After my October surgeries, I noticed that my hearing wasn't very good anymore and eventually my ear tube fell out. So this time, we were putting a T-tube in.  It is more permanent then the other tube I had in.  This 'surgery' was done in Marquette and my friend Amanda brought me. I wasn't out very long for this, less then an hour. Then we did some shopping and eating before heading home! I could instantly start hearing better again too!

Pinned hair, no headband!

My hair was finally long enough in front to pin or twist into a bobby pin. I no longer needed to wear a headband! It was such an awesome feeling to be done with the wigs, head wraps, hoods, headbands. I still have extensions on the right side to cover the awful swelling, though.

I had heard from so many people about how strong I was, and such a good spirit I had going through everything. I loved hearing that and believe that I was. Going through the surgeries, I really was doing what I had to make it through. I didn't see any reason to have a negative attitude, what good would that do me?

It wasn't until summer time that I started having a hard time. I think now that things have calmed down, it was all really hitting me. I have cancer. I had a horrible infection that could have killed me. I have many uncomfortable face problems. I am exhausted. I always try to look at the best in everything, the infection didn't kill me. My cancer isn't growing at the moment. My face problems could be SO much worse then they are. For having a titanium jaw, eye and right side of my skull, I look pretty normal!

But I am human and, like anyone, I get down about these things. I have days that I don't want to get out of bed. Life is so busy and tiring. I wish I had someone to take care of me. But that is not the case. I am a mom and I have two kids to make a living for and take care of.  My kids are definitely what keep me going every day.

Thank God for them.