Saturday, March 17, 2012

Oncologist Appointment

I'm going to let y'all in on my mom's account of our overwhelming appointment with the oncologist. I don't remember hardly any of it.

On Wednesday, we had a very stressful appointment with our oncologist. It seems as though the course of action has changed. I have never been hit so hard as I was yesterday. Even with the whole onset of this trial from the beginning, yesterday was most difficult. I've worked so hard to stay on top of things with appts. treatments, changes, re-scheduling to have things with no conflicts, staying read up on information given to me from the Dr's. researching on the internet,etc... and then they switched gears on us! As if it was a completely different language. I can't even go in to all of it because it was just that overwhelming. I had to leave the office for a minute to get myself together from crying so hard. I hated crying in front of Lindsey, but the treatments and side effects the Dr. was telling us was so painful to listen to. This would be the first case of this type tumor as an adult using this treatment of Chemo. So....that means they have nothing to go on! They want to hospitalize her for 4 months with treatments every 21 days. Giving her a slam dose that even 30% of people don't make it through the treatment because of the toxicity! Throwing up as soon as 10-12 hours after the first dose given. The port that they have already put in would have to be removed, because they wouldn't be able to use it for this treatment. As I said earlier, I won't even go in to all the details of the side effects. Needless to say, Lindsey was petrified as was this Momma! Somewhere along the line they have changed Chemo - Oncologist Dr's. on us. As of tomorrow - Friday - she will have only 12 more radiation treatments. Then we have to wait and have MRI on spine, brain and belly. Upon results of the MRI's we go to see Dr. Fine which is the Dr. at NIH (National Institute of Health) that is over Lindsey's case. This whole plan above for the Chemo is NOT what Dr. Fine recommended. And we are not going to proceed with the above plans. We have an appointment with Dr. Fine after all the radiation is completed and repeat MRI's have been made and viewed to find out where the switch in Dr.s came in to place and how things have gotten changed. Please pray for us to have CLEAR direction from the Greatest Physician of all - The Lord Jesus.


So that's all for now. Still taking one day at a time. Swallowing food is becoming a little more difficult each day. Not because of pain, but because anything in my mouth other than liquid makes me want to get sick. Taking my vitamins at each meal is very challenging. But ... God has helped me through each meal, whatever it may be and however long it may take, I'm glad I don't have a feeding tube! God is so good and helps me every time! I do pray between every single pill, "Lord help me" just like Peter, in the Bible.

Saturday, March 10, 2012

Counting My Blessings

The Lord has brought me through another week. I'm looking forward to going to church in the morning.

This past Monday was rough. It was my first Monday at radiation after a weekend off. It was challenging. I had to put my "Just Do It" attitude on and get it over with. Every Thursday, I begin to get used to the masks and can tolerate the radiation treatment a little better. This time, I was excited to see a Wednesday. I'm learning every week day is a stepping stone to a little break. One of my side effects that I've had for a little while has become stronger. My throat has been dry, but now I have pain in my ears when I swallow and yawn. Especially when I yawn. I've tried different things to try to cut my yawns short, if that makes sense. Chewing come seems to help, and holding my nose and then blowing out. The pain doesn't last as long.

My nausea is still present. I've been taking zofran a lot. I had a dream my doctor limited me. So glad it was a dream. It helps a little bit. The nausea has really messed with my appetite. I rarely feel like eating at all. Mom is really good at gently reminding me I HAVE to eat. I just try to remind myself of a feeding tube and how much I don't want that.

A new side effect that came last night was hair loss. I was taking my shower and washing my hair and noticed my hand was pretty full of hair that had come out. I'm so glad my hair is short. I would have freak out if I saw long strands coming out. Thank you Andrew for letting me buzz it. Now I'm not going to say it wasn't hard to see my hair fall out, because it was. I cried a little bit. Mom helped me come out a lot after I was done drying off. Once again, she was my rock to lean on. So right now, I look a little patchy, with less hair on the sides. I'm a little nervous about going to church tomorrow without a hat. My head is sort of sore, so I'm not wanting to wear a wig yet. There is a wig store in town that we're going to go by during the week to look at head scarfs. A head scarf should be much more gentle for now.

So that's my update for side effects. I titled this entry counting my blessings. Even though I'm feeling rough most of the time and I really do feel like I'm taking it minute by minute instead of day by day, I know the Great Physician is watching over me, I have great at-home nurses, and I'm blessed to finally have the stability of being in the apartment and unpacking to make it our home. God is good!

Sunday, March 4, 2012

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.

Saturday, February 25, 2012

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!!

Tuesday, February 21, 2012

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!!

Sunday, February 19, 2012

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!

Friday, February 17, 2012

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.