Post-Chemo MRI and the next step in 'The Process' - September 23, 2014

After a few rounds of chemo, I went back for an MRI to see the progress being made.

I didn't have headaches anymore so I knew it was doing something! I was excited to see where we were at. I had the MRI and then we went to Dr. Kassam's office to hear the results.

The chemo did nothing. The tumor actually grew!

How frustrating is this? I lost my hair and felt like shit for weeks and it was All. For. Nothing!

The photo on the left is after chemo and on the right is before. You can see that it has grown larger

We are now stopping the chemo and going in for surgery. This time it is going to be a craniotomy. I was being opened up from the bottom of one ear to the top of the other. I had no hair so we didn't have to worry about it being shaved.  But since I was still weak from the chemo I needed to wait four weeks to gain some strength before having the surgery.

October 23 we are heading into surgery.

In Mackinac Island

At the Packer game!

In the mean time, I got to go home and have fun and feel good for a while. During this time I went to Mackinac Island, to a Packer game and a good friend came to town. 

I was prepared to come home after surgery feeling and looking like crap. So, I got my kids' snow gear bought for the year. I also got their Halloween costumes ready. I had a halloween party that I wanted to go to if I was feeling okay so I bought a costume with a fancy face mask so if I had a swollen eye, I can at least hide it. I've been looking at photos of people after craniotomies and a lot of them had a puffy eye. Some had bruising. Others didn't look so bad. Crossing my fingers I don't look horrible after it either!

The kids were going to be staying with my Aunt Marcia while my parents were with me down in Milwaukee.

I'd be gone about a week again.

Losing My Hair...

I knew my hair was going to go.

My nice long hair

The idea didn't really scare me. I was prepared for it.

The first week after chemo was fine. I noticed no difference. About 4 days into the second week after chemo, I started seeing more hair around me. Then, I would run my fingers through my hair and I would have a lot more in my hands then normal.

Each day got worse.

Cut many inches off and starting to thin out

I cut many inches off it just to start the process of it being gone. I bleached it lighter too. Then, it got extremely bad.

I had hair EVERYWHERE.

My pillow was covered. My clothes were too. I couldn't touch my hair or it would fall out. Definitely was not going to brush it. And to wash it would be horrible. One day when I was at work, I looked in the mirror behind me and all I could see was my scalp at the top of the back of my head. That was the day I decided it was time to shave it off. I was sick of having hair everywhere and it looked horrible. My wig came in that day so it was perfect timing.

That night, I had to bring the kids to their dad's. Afterwards, I had a friend shave my hair.

Last picture of me with my hair

Shaved!

I thought maybe I'd cry as it fell off.

But, oddly I felt relieved when my hair was gone. I was free from the falling hair. My wig was perfect for me. And it felt good on my head. I had spent many days researching wigs and spent a few hundred dollars on it. I wanted one that was real hair and looked nice. Especially when doing hair as my job, I wasn't going to walk into the salon with a fake looking wig on! My friend and I were staying at a hotel that night so I was perfect timing to try out the wig. No one knew me there so I felt comfortable wearing it.

After we used a razor and shaved it to nothing

My wig!

It felt so weird being bald! I had a hat on a lot because my head would be cold! Even sleeping at night I usually had one on. I wasn't scared to show people, but I wasn't going to walk around bald either. I wore a wrap sometimes, but I would notice a lot of people staring at me so for the most part when I was out in public, my wig was on.

And sometimes I wore a scarf.

Sometimes I wore a hat and hood

The hair on my entire body stopped growing. Now know what it's like for a bald guy to take a shower! Literally two minutes! Scrub your body and get out. Haha! It was really nice! I would do my makeup, throw on my wig, and out the door I went! I always made sure my makeup was on point because the chemo took the color out of me so I needed my makeup to brighten me up. Keep me healthy looking.

And help me forget the fact that I was bald.

A lot of people lose their eyebrows and/or eyelashes. I lost neither, which was amazing. I felt lucky for that!

But, 4 months after I finished chemo, I lost my eyelashes and my body hair slowed down. Once my eyelashes were out, they started growing back and so did my body hair. Every 3 to 4 months this cycle happens.  It has made me realize that even though I'm not on chemo anymore, some part of it is still in my system.

My hair started growing back about 2 months after my last round of chemo. It was exciting to see brown on my white bald head! Slowly, but surly, it was coming back!

My first time being out in public around people I know with my wig. Labor Day weekend.

Port. First Day of Chemo...and the Next Two Weeks Aug. 13 2014

My chemo route is a lot different then what most people have.

It is 5 days straight of chemo in the hospital. I was getting 3 different kinds and they were hooked up to an IV. One was only an hour, one was 5 hours and the other was 24/7 the whole time I was in the hospital.

So my mom and I stayed in Appleton at my brothers the night before, and the next morning I went into surgery for the medi-port to be put in.

A medi-port is a heart shaped object that sits in your chest with tubes connected to veins. It makes getting chemo and meds easier. Blood can also be drawn from it. I was nervous for this surgery because I was not going to be completely out for it. It went a lot better then I thought though. A lot of people doze off during this surgery, but I was so worried about feeling something that I stayed alert. I was in an operating room, my head was facing the left and a sheet was covering my face. I had a tiny hole I could look out of. I didn't feel anything after the IV was in and the numbing shots were given. I had one incision where the port was, and another on my collarbone.

After, I was sent to my room on the 12 floor in the "tower." The room was big and looked nice. A bit later, nurses came in all decked out in plastic outfits and gloves, and they hooked me up to my first chemo.

Here we go, lets puts some poison in my veins.

In the hospital, I never felt too bad. Some food sounded good and some sounded gross. Any time that something sounded good my mom would go out and get it. Certain foods I had while getting chemo where great, but I never want to have it again. The thought made me want to puke. Take Noodles and Co for instance. We had one across the road from the hospital and I LOVE pasta. I couldn't wait to get food from there.  My mom brought me some fettuccine alfredo one day. It was good, but when I was done, I never wanted to hear the name Noodles and Co again! Still haven't ate there since. I was nauseous at times, but they had some good meds to keep that at bay.

So antsy.

I was so antsy in there though! I was restless and puffy feeling and I couldn't wait to get out and go home. I wasn't allowed to leave that floor except for going up the the garden. To get to the garden, we would go up to the top floor and there was an indoor and outdoor garden.  It was beautiful! There were so many plants and flowers. My mom always tried to get me up there. She wanted to get me out of my room and walking. I went a few times, but I was satisfied with sitting in my bed. Some days I would be so crabby towards her. I was going crazy!

Taking a walk in the garden

I had a few different visitors. My brother and his girlfriend, Alyssa, came with such nice gifts. My cousin and her mom. My aunt, uncle, and cousins. It was so nice of everyone to come. 

I know it was hard too. What do we talk about?

I'm hooked up to chemo.

I have cancer in my head.

Last IV hooked up for that round!

The last morning in there, I was by myself and got up to go to the bathroom. I walked into the bathroom and I had a dizzy feeling, kind of like when you get up too quickly. Usually, I just close my eyes for a second, and then it passes.

This time though, I woke up from my IV beeping and I was sprawled across the toilet. I passed out!

First time for me.

I then went to the bathroom and crawled back into bed. I didn't tell anyone because I didn't want this to cause a longer stay in the hospital for me.  I was lucky I didn't hit my head or get hurt in anyway.

I was desperate to get home. It was late in the day by the time my last chemo ended, but I begged my mom to drive straight home so I could sleep in my own bed.

And that is what we did. I think it was a little after midnight when we got home. I wanted McDonalds on the way and it was delicious. I could tell the taste was a bit off, but I didn't think much of it.

The next day I felt okay. I was weak, but food sounded good so I ate a lot. The taste was still off a bit, but I tried to ignore that. I couldn't stand in one place. I would get sick to my stomach and get the dizzy feeling again.

By the next day, I felt like shit. Pure shit.

I was weak, tired, sweaty or freezing, and my mouth hurt. I had a hard time eating anything. I had to find soft, cold things to eat. And nothing tasted normal.  My aunt came over to give me a shot to help boost my white blood cells.  I slept a lot the next 5 days. I was constantly thirsty too. Two days later I had to go to the doctors to get my vitals checked and a blood draw to make sure things were okay. I did tell my doctor that my mouth was hurting so she gave me two meds to swish in my mouth. One of them had litocaine in it and that makes my mouth numb for a little bit and I tried to eat as much as I could in that little time! I was good at taking my nausea pills so I didn't have much of an upset stomach at all.

The reason I had a lot of mouth problems is because hair, nails and taste buds have a quick turnover of cells. They are the first thing to be affected by the chemo. My mouth hurting was a side affect of the drug I was on 24/7 while in the hospital, so it is not surprising that it affected me so much.

I always needed to be sitting or laying. If I was standing, I needed to be moving around. I just felt weak, gross and like I was going to pass out.  I went to church one weekend, and I couldn't even stand during that! I had to keep sitting down and I just felt stupid doing that.

The next 6 days were the same. Painful mouth and throat, only soft cold foods being ate, and a lot of sleeping. I now had to be very careful about not getting sick. We had moved Shaya to her bedroom because I didn't feel it was good for us to be in the same room. I also stopped sharing anything with anyone and and I wasn't kissing the kids on the lips anymore. I laid with Shaya every night until she feel asleep, but I didn't let her breath on me while I was in there. She had to be turned the other way. It was sad, but they both understood that I could get sick easy and would need to be in the hospital again. I did not get sick at all during that time. Focusing on not sharing anything with anyone, I believe made a big difference.

My wonderful family had a spaghetti fundraiser for me and I was not allowed to be there either. The fair was going on and the kids had to go with other people. Shaya was in gymnastics while I was going through chemo and it took all my energy to go and sit there for the hour she was at it. My friend was over working on my sauna many different days, so I sat in a chair outside and watched that being worked on.

Once the 6 days were over, I woke up the next day and I was feeling great. It was like a flip of a switch! I had another week of feeling good until I would be back in the hospital for another round.

I would go into work for a few days that week, and eat as much food as I possibly could!

Final results day is here!! - Aug 5 2014

The last few weeks were weird. Kind of in "limbo."

Knowing that my chance of having cancer is good. There is still that little bit of hope in me that it isn't...but I'm also prepping myself for it to be cancer.

My parents and I head down to Milwaukee. We have a meeting with Dr. Kassam and a lot of other doctors. I'd say its a bad sign that lots of doctors will be in the room, but at the same time, having them all there means they have a plan intact for me, right?

We stayed at my brothers in Appleton the night before, so that we can be to Milwaukee bright and early the next morning. When we get to Dr. Kassam's office we didn't have to wait too long to be seen. Once we enter the room we have a few nurses in with us and then Dr. Kassam is in just a few minutes later.

Tuesdays are his office visits. Every other day he is in surgery so this day is always very busy for him. Sometimes breaking news to people like us, sometimes checkups with patients who previously had surgeries, and also giving out good news to others.

Following Dr. Kassam in the room this day is the "other doctors." A neuro-oncologist, a radiologist, and an oncologist. Dr. Kassam also had his nurse and NP in the room.

He did break the news to us that it is cancer. He apologized so many times for taking weeks to get results, but every feedback that he had gotten, he wasn't satisfied with, so he had it sent out to more testing.

They finally had it narrowed down to a cancer that is very rare. Its more commonly found in around ten year old children. They were basing my route of removal on what they do for children, but a stronger dose of everything.

We will be starting my adventure with chemotherapy, shrink the tumor as much as we can, and then I will have surgery to remove what is left. And after that- radiation. They wanted to get started right away. The following week if possible. They asked about Monday, but that was my daughters birthday so I asked if we could put if off a few days.

Wednesday August 13th it is!

My dad headed home on the greyhound (it was quite comical walking him to the bus station with his backpack).  He made it down for every surgery or important appointment but always needed to get back to work. My mom and I stayed a few more days to have all kinds of tests done.

I had another MRI and a CT scan. Another test was a PET scan to make sure that there wasn't cancer anywhere else in my body. If there was cancer anywhere else, this could be a big change in our plans. The PET is the first hurdle to get over.

"Please come back clear, besides the tumor in my head."

I had a meeting with my Oncologist, Dr Howard. She was very sweet and nice. She went over the three chemo drugs I was going to be on and all the side affects possible from them.

It was a bit scary!

Losing your hair is the obvious one, but losing your eyelashes, eyebrows and nails all shocked me! It can also cause infertility or early menopause. This one bothered me the most. I'd always wanted to have more children someday, so I prayed this didn't wreck that chance for me. There were many more side affects but these were the biggest ones. And everyone reacts differently to the chemo drugs.

We spent the first night at the Wisconsin State Fair

ENT Check-Up Day and The Unexpected News

"...Today is 3 weeks out from surgery.

I still have zero results! It was sent out for a third "second" opinion!

What. The. Hell.

I have an appointment with Dr. Corsten, who did the surgery with Dr. Kassam. I am nervous because he will probably put something in my nose and I don't want him touching it! Ugh. I hated it last time he put the scope in to look around.

A lot of people message on FB or text me saying "Good luck! Hoping for happy news!" I keep telling them that the hospital is going to call me with the results. Today is strictly just looking in my nose and ear.

My mom decided to wait in the waiting room because I was going to have a scope again and it was something she didn't want to be in the room for.

Dr. Corsten came in the room, said I looked great, shook my hand, then sat on his little stool by me and told me that they are still waiting on the results from Johns Hopkins, but they are pretty positive it's cancer. Cancer.

Oh, Lord.

He said there's a slim chance it could be benign, but they really don't think so. When results get in they will call me. We will probably go into surgery again and remove what we can. Then radiation, maybe chemo. Depending on what kind of cancer it is, depends on the route we are taking.

I handled the news well. I didn't cry. At one point, walking to the car I wanted to, but I didn't let myself. We are going to get rid of this. There is no other option.

My kids need me. I think I have a positive outlook on life and hope that works in my favor.

Dr. Kassam had a feeling it was cancer from the second we were in surgery and since then, twice he has said" it's nothing we can't handle." I'm going to go with that motto.

(And the scope did not hurt in my nose at all. I think the reconstruction surgery helped with that!)

So, after I was through with Dr. Corsten and left the room I had to break the news to my mom...

I hated the idea of needing to do this. We didn't come prepared to hear this. No one wants to hear that their child has cancer. And I need to be the one to break it to her! She is more emotional then I am and I always made her be "strong" for me. I didn't want to see her crying about me. She has this breathing thing she does to help keep her calm whenever we are waiting for results or hear bad news...I can handle that. My mom took the news well.

I can still remember her face when I told her. But she did not cry.

We sat in the car for about two hrs before calling my Dad. We don't want to break the news to people. That's what would make it real. I don't want everyone to be like, "Oh Val, I'm sorry," or crying, or anything like that.  I just don't want to deal with it. I know that sounds kind of mean, but it's hard to console others when you are the one who is sick.

Maybe if we keep quiet about it, it won't feel real.

Once we were out of the city, we stopped at a cafe called Rangers. I ordered a grilled cheese and fries. Every time I drive by there now, I think of this day. My mom and I ate and were pretty quiet. It's one of those times where we didn't even know what to talk about.

And we both had so many questions but no answers for them..."

First Few Days Back Home

Over the next few days, everything was too loud for me! After a year of having muffled hearing I had to get used to "normal" hearing. 

('Normal' is going to be something I seem to use a lot in this. What was 'normal' is no longer my normal, but its what I always try to get back to. For my kids sake...for myself. I was happy were I was in life. I just wanted to go back to that 'normal' life of mine. But it's a struggle. I want to go back to what was my normal, but normal isn't normal anymore.)

People chewed too loud. 
My car made weird noises I had never heard. 
At the gas station, trucks that went by with trailers were too loud. 
My kids talked to loud. 
I was constantly telling them to "talk quieter, close your mouth when chewing, drink slower so I don't have to hear it." 

I wanted to plug my ears! 

The first time I tried driving was horrible. I felt kinda dizzy, and my reaction time seemed like it was off...so after the first day trying (9 days out) I didn't drive again for a few more days. Then, I became comfortable with short drives.

I hated having to rely on people to bring the kids and I everywhere. I've always been an independent person and to rely on others seems foreign to me. There were so many people willing to help, that wasn't the problem, but it was just odd for me.


Things were going okay though. I'd been taking a lot of naps and bringing my box of kleenex everywhere I go. I still had no taste and I was worry that it was gone for good!

(Oh...and 2 days into being home, my cat decided to have four kittens on my bed next to me while I napped! You have no idea how entertaining this was!! Haha.  My kids and I loved having the kittens! They were so cute and fun. All were given to good homes too!)

My favorite! She was a blonde! haha

All four kittens- blonde,orange and two gray

They were so darn cute when they were teeny!!

Biopsy results day. 6 days after surgery

Ok. Today is quite nerve wracking. 

So many answers. I'm so excited to see the doctor, but also scared. 

Do I have cancer (praying to God every day that I don't) or do I not have cancer? Meds after this or surgery again? Surgery through my nose or my skull? Going home tonight or do I still need to stay here?

I don't mind any of those options besides the cancer. 

My babies need me. I am their life support. The 3 of us are very close. Shaya sleeps in my room most nights still. She also showers with me most days. (Lol.) We have our own little ways and routines.  Rease is my little partner. He is the man of the house!

My tumor seems to be in too difficult of a spot to remove it all. Many nerves (hense the numb face) and my carotid artery are right there. So it can't be cancer.  It needs to be something that some medication or radiation can get rid of...and we can call it a day!

We all know that whatever comes my way I am going to deal with...but I like to think that I am not giving cancer the chance to happen. 

Say a prayer,  wish me luck,  do a little dance. Whatever it is you do for good vibes, I need them today!

Update: so as my mom and I pulled into the hospital and drove up and down the entire parking garage to finally find a spot, I  get a call from my doctor's nurse saying the results aren't in.  Boo...not happy. We are scheduled for Tuesday at 12:30 now. 

We went inside to use the bathroom and decided to go to my doctors clinic office and make sure it was okay for me to drive the 6 hours home. In there the lady contacted the nurse and she said yes she hasn't changed her mind since I've talked to her a bit ago. Ok, I understand that but do you know how far home is from here?!  I told my mom 'lets just go home.' I was a bit upset with the nurses attitude toward us. 

Off we went and as we walked through the cross-walk that separates the clinic from the hospital, we ran into Dr. Kassam! I was so happy to see him! He told us it was okay to go home. He said the biopsy went out for more extensive testing.  

What the heck does that mean? Not sure what it is? They know its cancer and want to figure out more about it? 

Ugh. Great. 

Nothing like waiting at least 5 more days. So, we headed home, but at least we had the peace of mind that Dr. Kassam said it was okay to go.