It's been a while

Last week was pretty challenging. Radiation seemed to go on and on. I sort of figured out a way to distract myself to get through the smell of the radiation when it's scanning my head. I go through the alphabet in sign language on both hands however many times it takes.

The reason why it was so difficult at first was because my nausea was pretty bad that day. I've always been afraid of getting sick on the table because I'm pinned to the table and can't move, so I'm afraid of choking. So that day I just cried afterwards because I couldn't see how it would be possible to make it through 3 minutes of a head scan if I had trouble making it through 30 seconds - 1 minute. I was very discouraged. My dr. told me to double up on my zofran and ativan.

The next discouraging moment was Wednesday. Normally, I have 3 scans then treatment (radiation). I usually count my scans so I know when I'm about 1/2 way through. That day, for some reason I was crooked and they had to do more scans to make sure I was lined up correctly. This time, it wasn't the nausea that bothered me, it was being on the table longer. My tailbone was hurting pretty bad. It's weird because sometimes the masks are super tight, and sometimes they're not. I have to constantly remind myself to relax my shoulders and every other muscle in my body to just get through it. I didn't cry until I was out of the office and just told Mom "I feel like this week is never going to end!" She is a huge support and just held me. :)

Every Wednesday, after radiation, I meet with the radiologist oncologist and a nurse to just go through how I've been feeling the past week. This coming week, I'll fill them in on how my throat is now hurting an eating is a little painful when I swallow. He told me they have "magic mouthwash" that isn't that great, so I went and bought cepacol tablets hoping for relief that way. I told the dr. they should rename that stuff too, if it's not "magic!" Another thing is I told the dr. about my increased nausea, even at home. He told me is was psychological. If you have questions about that, ask my Mom, I can't remember how he explained it. I just remember leaving thinking "This IS NOT all in my head, I KNOW I almost threw up! I KNOW what I'm feeling!"

Last week I also went to the eye doctor. That appt. went well. I was given a prescription for new lenses. My old ones make everything pretty blurry. My eyes still flutter every now and then. But as Dr. Fine said, with time this should all improve.

I also had bloodwork through my port for the 1st time. I was pretty nervous. The nurse told me to hold my breath, and I was thought "oh man, this is gunna hurt if she's telling me to hold my breath already!" Then she poked the needle in, flushed the port, and then took blood. The flushing of the port was my biggest fear. My veins are so small that I remember each time they flushed them from IVs, they would clog and it was painful to unclog them. That nurse said since we're using such a big vein, (jugular) that shouldn't happen. I was so thankful when I couldn't feel it when she flushed it. God is good!!

So that was pretty much my week. I was very grateful for the weekend this time. I'm already looking forward to the next one.

Ways to pray:
That my sign language distraction will continue to be an effective way of distracting myself.

Miracle: That I'll fall asleep during the whole treatment. Since I'm taking 2 ativan, it's possible but it hasn't happened yet. Kind of hard when you feel yourself pinned to the table.

Our household goods are on their way. We should have lots of boxes in the apartment around the 7th or 8th.

Thankful ...

I talked with my mom this morning a little about this, but I want to share it with y'all too. Just to let you know what a blessing of a mother I have.

If my mom wasn't here, my healing wouldn't be where it is today. I would constantly be stressed over what building I need to be in, at what time, and stuff like that. When she calls a shuttle, she tells them she needs a ride from bldg whatever to the next bldg. I guess since she does it all the time, it's easier for her to remember. This short term memory loss really makes things difficult.

It's really nice to know that Jonathan has someone that loves him to take care of him. Eventually, he'll have to go to daycare and man am I dreading that day! But Mom says she'll be here until I'm done with treatment. She is so good to me.

Now to my sweet husband!! What a blessing he is to me! I'm so thankful for the man God has given me. Andrew Michael is the coolest provision from the Lord. He's a great Daddy and a wonderful help mate. He's been my rock through all of this and has let me squeeze his hand so many time.

And how could I forget Matthew & Erin Martin!! What great friends they have been to us! Matt has been here, at the Fisher House to pick us up for appointments and take us to and from the hospital, to McDonald's and even brought a smoothie back from Smoothie King. He took us grocery shopping one day too. Erin has been a blessing in being emotional support as a woman and just being present as a friend. Thank you guys! You are the best!

Okay, that's all for now. Thanks for letting me brag on my four special people!!

Radiation Treatment Day 1

Today I had my first radiation treatment, at 11:00. The night before, I had a little difficulty going to sleep, but not too much. I wasn't too worried about the procedure itself. I woke up with my stomach in knots and I guess my subconscious was nervous.

We made it to the radiology area at the base hospital and they took me back pretty quickly. I changed into a gown, kept my fuzzy warm socks on, and hopped up on the hard, cold table. I remember one of the first questions the nurse asked me was what type of music I liked to listen to. I'm allowed to bring my own music in, so I'll have to make a radiation CD or something. I was surprised by the music request, but later found that I couldn't hear it over the machine.

I didn't know how loud the machine would be. I have been trying to work on my sound and light sensitivity by not wearing them as often, so I left both at home today. Bad idea. Tomorrow, I'll be taking my ear plugs in with me. Maybe I'll be able to take a quick nap. I just prayed through it all today.

The masks were pretty tight. They were soft and warm when we made them, but today they were hard like a plastic hockey mask from Walmart, at Halloween. Big difference. Remember, there was a hole at the eyes and by the nose so I can breathe. I asked for prayer for my nose not to be stuffed up because it makes it hard to breathe like that. Anyway, the masks were much tighter than I anticipated. The nurses had a hard time clamping the pelvis one to the table, so I feel like tight isn't an accurate description. Let's just say my tailbone was very sore from being pinned to the table for so long. There's nothing I can do about that. Just pray through it. I didn't sneeze through any of the treatment, which was good. That would have been gross being that I couldn't move. The treatment today was 45 minutes long since they had to make sure I was lined up correctly and all. The future treatments should be about 20 minutes. The actual radiation is only 9 minutes.

After the treatment, a friend of ours, Matt Martin, took us to McDonalds. I ordered a cheeseburger kids meal and it felt like a large value meal. I didn't think I'd be able to eat it all. But with the Lord's help, I was able to eat it all. I was pretty tired too.

After lunch,j I took a nap. Jonathan had just gone down for his nap so I figured I'd give Mom and break and go down too. I was beginning to feel nauseous from the smell of radiation. I learned to hold my breath when the radiation came to my front/face and then breathe when it was on my back. I don't even know how to explain it, but I can still smell that odor that came just from the radiation treatment. Ugh ... not talking about it anymore. Sorry :(

The nap helped, but then I woke up with a headache. I figured that was from not enough water. I'm supposed to be drinking lots of water during treatment and I know I haven't had enough today. I took tylenol to help anyway.

I played on the floor with Jonathan for a while, then realized I should probably try to eat something for dinner. Mom made me Ramen noodle soup. We grew up calling it baby doll hair soup. :) But I had almost a full pack. I got full pretty quick and couldn't eat it all.

So all in all, the Lord brought me through another day. Today I felt nauseous and not really wanting to eat, but I think the tough stuff is ahead. I still prayed for no/minimal side effects and I'm trusting the promise that God will not give me more than I can handle with all this. I think my level has gone up because I certainly didn't think I could handle this much! Lord have mercy!

1 down, 29 to go. Earlier today, I put on facebook status that it was a "Just Do It" day. Well, I just did it. Tomorrow, we'll do it again. I think I'm going to be thankful for weekends, for a break from appointments. Don't mean to complain, but it will be nice to not have those for a couple of days. God has convicted me to be thankful for this not being more challenging. I think of Randy Youngblood and how he is going through chemo and radiation therapy at the same time! If you think of it, lift him up! Actually ... do it right now.

Update on Andrew: he's made it to AZ safely (thank you for praying!) and the movers came today. They'll finish up tomorrow. We should have our household goods no later than March 8.

God has continued to provide in many ways and we're continuing to thank Him for mountain He has set before us. I hope you all were able to see my wall of love. Mom put up all of my cards that I've received from you all. It's encouraging to look at that once in a while and just know that I have lots of fellow believers lifting me up before the Lord.

Thank you all for your encouragement, love, and support through this trial. We're gonna make it through!!

New Things To Pray For ...

Hey y'all! How'd the weekend go for ya? Mine went pretty good. Each day is a little better with the recovery of having the port put in. I'm able to put on a shirt by myself. It takes a little while, but it gets done.

Radiation begins Tuesday at 11:00. I have a cold right now, so please pray that I will not be stuffed up when I go in. The mask only has holes to breathe around the nose. My mouth is covered. Also pray I don't sneeze during the radiation process too.

Something my mom reminded me of today was about the side effects of radiation and how to pray about that. She reminded me of the scripture that says you have not because you ask not. So that being said, we're praying for NO side effects from radiation. Only having to go to the bathroom a lot because I'll be drinking so much water.

We have a friend who has had very minimal side effects, so we've seen it happen! We've already got the aloe vera for my head and are prepared for hair loss.

This is a little off the subject of cancer, radiation, and all that, but the movers from the Army will be at our house in AZ on Tuesday to pack everything up. Andrew is there to sign off on everything and will be driving back later next week. Pray that everything he needs to get done at Ft. Huachuca will be done quickly and in the right way. Also pray that our goods will make it to DC sooner than later. Mom will need a bed to sleep on! We'll have a blow up mattress, but those aren't very comfy!

I think that's all for now. I'll let you know how I'm feeling on Wednesday. God can do great things! He's brought me this far!

Chief Neuro Oncologist Contd.

Some of the typical side effects of this radiation include...
Sore Throat Low Blood Count
Diarrhea Loss of appetite
There's a much longer list of other side effects, but as Randy Youngblood said, "We'll let God determine our side effect list."
I need to eat well, a high calorie diet, which means I'll probably talk with a dietician and not just eat icecream and twinkies all the time.
So after my 6 weeks of radiation, I'll take a 3 week break and then repeat an MRI on the brain, spine, and belly area to see how I tolerated radiation and any progress made. They're doing the belly since the shunt comes from the brain and empties out in the abdomen. They are wanting to make sure there are no cancer cells growing in the abdomen area. Somewhere in the near future, I will have the shunt tied off so it can't empty anything else.
I had asked him about how it will affect fertility and he said I have a very good chance of having a baby after all this is over. He just told me and Andrew to watch it and not get pregnant in the next year since radiation can cause more birth defects. I had mentioned that if I became pregnant during treatment that I wanted to stop with radiation and chemo. It's not an option for me to put my baby at risk of not living.
I asked Dr. Fine if a bone marrow transplant was in store. Right now it's not an option, but would be if the tumor returned later on in life.
Overalll, Dr. Fine feels that I'll tolerate the treatment well because they have meds to help me through and diet help.
He thought would be a good idea to get a life alert bracelet to show my short term memory loss, codeine allergy, that I have a shunt in place.
We talked about how I could have issues with my thyroid later, like years later and that I'd most likely need to have hormone therapy later too. My short term memory loss should improve after treatment.
So radiation starts on Tuesday, so be praying. I knew this day was coming, but I'm still in a daze of I can't believe I'm getting ready to start treatment for cancer. I just need to put on my Just Do It shirt and get it going.

Chief Neuro Oncoologist

On Wednesday, Februahrry 15, we had a 5 hr appt. at NIH (National Institute of Health). We had to get there by 8:00 to go tough security and all. It was pretty tight.
We arrived close to 8:00 and were just a tad late for checking in upstairs. I met with a nurse practioner, Ms. Royce (sort of like Dr. Fine's "right arm") She talked through my medical records from the time I was born to current status. Then she did some tests for my eyes and neuro function. Next, another doctor came in to look at my eyes and said I was textbook. Meaning I was following the book on cases like mine. I didn't have anything new. He told me it should get better or back to normal within a year.
After a little bit of waiting, we went into a conference room to meet with Dr. Fine and Ms. Royce to discuss my plan of action for radiation and chemo.
Right away Dr. Fine encouraged me with how great of a job my surgeons, Dr. Davidson and Dr. Armonda had done. I didn't realize how difficult of a surgery it was with having a tumor directly in the middle of the brain and taking only little pieces at a time.
Often times, you have to have multiple surgeries to get the tumor out or there are complications because of the location. Because of God, that was not the case. I have come out with minimal side effects that appear to be self healing over time; and they were able to take almost everything out, tumor wise. Just the microscopic stuff left.
Instantly that puts me in a "better" group category because of the job they did. My health and age as an adult helps with that too. Because my tumor is seen more in children, babies and children aren't fully developed & the treatment is often worse than the disease and they opt to allow their child to pass on rather than put them through treatment and they die from not being able to fight that. So with adults, most development is complete and because of that, treatment is better tolerated in those who are past adolescence. That is the "better" group. There is a real chance of cure with adults.
Dr. Fine said I should be back to living a normal life around 6 months after treatment. He encouraged me with reminding me of all the medicine they have today to help you through radiation and chemo treatments.
Dr. Fine mentioned this kind of tumor requires chemo & cranial-spinal (head & spinal) radiation. Smaller cells could end up further into the brain, but so far, all of my scans have come back clear. He was very encouraged by those results.
His recommendation is to do radiation in small doses every week day for 6 wks. Lower dose, lower at a time, equals little damage. However, he wants to be aggressive now with starting radiation sooner than later. (Feb. 21)

The Making of a Mask

Today, I went to a radiology appointment to have my mask made and drawn on for how they need to line me up for radiation. Oh and I have one tattoo mark on my chest. I guess that's for lining up too. Sorry, I won't be showing that one off. It's just a little dot anyway.
My appointment was at 10:45, but I set my alarm to drink a lot.
So we made it to the hospital and I thought I was fine, until they called me back. I asked the nurse what the procedure was like since the doctors had not told me. She explained it, in detail. I cried. Not because of what was coming, but because of how much I didn't know. This was the first time for anything like this and I was afraid of the unknown.
Then the doctor came in and explained it in further detail. I cried again. This time because it hit me that I have cancer and I'm starting radiation and chemo. I don't know why it just hit me now. But it did. It was a surreal moment. The doctor did very well in explaining everything and being very understanding about my crazy emotions. He told me, think of it as getting a facial. They not only did a mask of my face, but also of my pelvis. I'll be having radiation from my head to just about my tailbone. They want to cover the spine. The masks were to make sure I was lined up for everything.
I went in and the nurse told me to take everything off but my underwear and put the gown on. She was great too. The room was pretty cold. Not as cold as the MRI suite. I didn't know just how cold it was yet. So I hopped on the table and my oncologist (Dr. Jones) was there. I wasn't expecting him to be there. I'm not sure why it was such a big deal, but it was. I asked him if he was staying for the whole thing and he said yes. Well then the nurse said I'd be exposed for some parts, meaning towel off my chest. Great! 3 people I don't really know get to see my chest like it's nothing. That was the least of my worries.
So I laid down on the piece of plastic that would be my bed for the next at least 30 minutes. They pulled the sheet off I was also told not to move my head, not to talk, and to keep my eyes closed. I did all of that, but could hear everything (clipping of mask, bed I was on going in and out of CT machine, etc) I later told Andrew that watching the original of Planet of the Apes before this procedure wasn't a good idea. My reasoning for that is because your mind wanders, or the devil used it against me.
So the head mask was finished and they did the pelvic one next. I was sort of thankful for that one because I was really shaking by then. It felt pretty good. I do remember feeling my stomach as I was breathing.
I did have one moment when the devil fed me a lie of if they started cutting on me or causing me pain, I'd have NO way out since I was in these hard cast things clamped to the bed.
I told him to leave me alone and he did. Now here's something I forgot to mention earlier. When I went in the CT machine for the first round of pictures I remember praying "Jesus help me, I need to feel you!" Almost immediately, a song was brought to my mind that I believe was an answer from above. I don't remember the name of the song, but I know the lyrics. It was from an elementary musical I helped out with in high school. Here are the words of the chorus...
I am with you wherever you go
I am with you you are never alone
I am with you my heart is your home
My child, I am with you
So there it is! My encouragement that got me through most of this experience. I'm not sure how long the whole process lasted. I really don't care anymore, now that it's over.
I remember crying after I sat up from having both masks removed. The nurse asked me why I was crying and I just told her I'm so glad that everything's over. She gave me a hug and helped me off the table. I was so glad to get into clothes since I was cold and that this big step was over.
I think I cried again when I saw Mom and Andrew in the waiting room. Happy tears of course. Like they were there to save me. lol.
A couple other cool things that God did today were help me with my sight and hearing. As most of you may know, I've been super sensitive to sound and light to the point of wearing sunglasses and earplugs almost all the time. So today, I didn't wear my sunglasses and have been without my earplugs for half a day! Yay God!!
Oh the other thing with my vision was I am able to look up!! With how the tumor was positioned and causing pressure on my eyes, I've had great difficulty looking up at all. I often had to ask whoever was talking with me to sit down so I could see them. Not today! I was able to look at the face of whoever was speaking to me! I remember thinking last night about it and how I wouldn't be able to drive with that challenge, or I wouldn't feel like it would be safe enough for Jonathan to be in a moving vehicle with me. Then I thought of how if this was a permanent challenge that we most likely couldn't add to our family because if I couldn't drive one around, how would I do it with any more? How would I get a lot of things done? Grocery shopping, taking him to school, going to the library, etc. It was a moment that was sort of sad but the Lord has healed me!! Jesus is my Healer!
So that's my story for today. Those are my blessings. It was an emotional roller coaster, but I'm closer to being better! Oh and my oncologist and one of my nurses from the mask thing were believers. Sometimes I feel like I need to draw the first half of the fish before I talk anyone and see if they'll draw the second half. :) It's so nice to know I am surrounded by brothers and sisters in Christ through this mountain.
Talk with y'all later!