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.

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!

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.