Good, but exhausting day

I had quite a day today. David had his Spring Music Program at school this morning. Picture 70+ Kindergartners standing on a stage singing and doing the Hand Jive . . . and remarkably very few were hitting each other! He was able to lead the motions to one of the songs and took it very seriously. There was a bake sale after the show, so I bought him a little something for after his lunch. When I saw him after the concert, he informed me that he found a dollar in his pocket and bought Dave and I a cookie to share. He didn't buy anything for himself. It made my heart melt.

Then, I had an appointment with my oncologist this afternoon and was also scheduled for Herceptin following the appointment. My visit went well. I am cleared to drive!! I was very excited to hear it and then a little nervous since I haven't driven for almost 7 weeks! An MRI of my brain is scheduled for the middle of May to see what progress has been made and then we will do a follow-up CT scan to check the rest of my body the beginning of June.

By the time I got home from everything, I was so exhausted. I usually rest after lunch and didn't get a chance to today. I did get some rest late this afternoon and was able to enjoy dinner with everyone. Oh, I drove earlier this evening. Dave announced to the neighbors as we walked out the door that everyone should stand back because Barbara has the car keys. I also appreciated another neighbor directing me as I backed out of the driveway. We arrived to our destination safely and with no events along the way . . . and it felt so good!

Steroids - BE GONE

On Friday, I held up my last pill and said, "Please, I don't want to ever have to take this again." The first day without it presented its challenges, but compared to the symptoms I could have experienced, the day was tolerable. Yesterday, was a little easier. I even went to a bridal luncheon for 2 hours. I napped both before and after and all that was really required of me was to sit, eat and enjoy. And I did. I think part of what made yesterday a better day was just getting out and doing something fun.

Today, was a little easier too and I know each day will start to feel that way. I meet with my doctor this Thursday and then the MRI will be scheduled for the next week or so. I have had no symptoms for weeks now. My memory is certainly not what it was but that is why I have lots of lists around the house! I also did a field test at my ophthalmologist's office last week to see how my glaucoma was doing since I had been on the steroids and he called today and said there were no signs of it. The steroids could have put additional pressure on my eye and actually made my glaucoma worse. But they didn't and that was great news to us!!

We also found out today that Dave's class for the summer can be taken in New Castle instead of Dover. We are just getting lots of good news today and we sure you can use it!

She's in there somewhere . . .I am beginning to see her

Yesterday and today were really a turning point for me. I have been tapering down on the steroids and actually started feeling more like myself. I am still not quite there yet, but I am seeing glimpses of the person I know. My energy level has been more than the past couple of weeks. I was actually having a catch with David yesterday and sliding down a sliding board with Dawson! I kept waiting for the feeling like I was going to crash to hit but we came home from the playground and I needed to lay down but didn't have the crash.

Only 4 days left on the steroid! The problem is that my ability to handle stress is difficult right now and "life" things that I would normally be able to handle are not for me. So, Dawson decided now would be a good time to become a difficult 3 year old. Nice timing, kid.

Pajama Day

We had a pajama day at our house yesterday. Both boys have been home for Spring Break and yesterday was cold and rainy all day - perfect for PJs all day!

I have been tapering down on the steroids this week and have not yet had any of my original flashes/pressure come back. I pray that this continues as the week goes on and I can get off these things and quick!

I was helping Dawson get dressed for bed last night and had a baseball cap on my head that kept getting in the way. I asked him if I should take it off and he said he didn't want to see my weird hair. We have done bald around here before but I think the swollen face along with the head is a little harder on them this time. Even David has asked me to not go baldy because it makes him sad to see me without any hair. Nothing like kids to give it you straight.

Treasures of Snow

A friend sent me this incredible book, Treasures of the Snow by Janet Paschal. It is written similar to journal entries. It talks about her breast cancer journey. She also started getting Herceptin the year it was FDA-approved, which is the drug that is keeping the cancer out of the rest of my body! I read something last night that was so inspiring and needed -

"There are treasures in the storms, opportunities in the interruptions. They issue mandates to uncover what we really believe in the marrow of our bones. They wrest from us our schedules and plans, and lead us to a place of surrender. When the storm is spent, our brokenness stands tall, like the old oaks and hickories and maples. We bend and bow and shed our excess layers, but we do not lose heart. We are not unlike Paul who wrote in 2 Corinthians 4:8, We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.

Even in our brokenness we see more clearly who He is; that even as we wrestle in turmoil, we discover a steely resolve that we are not alone; that, even as the storm rages, we discover what we suspected all along: That He is in the storm, in the turmoil, in the brokenness. And we declare , "Oh Yes, I am sure. Thou art the Christ."

Who am I?

Had a little excitement in the house this morning - apparently, the steroid I am on can raise my blood sugar levels quickly and unexpectedly. Even though I have been on it since 3/13, I hadn't noticed this problem. I had been eating sweets when I wanted and feeling okay. Well, the other night, had some dessert and was later talking to Dave. He was telling me that I sounded out of breath and something wasn't right. It passed. Today, I ate a cinnamon roll with the boys for breakfast and I started sweating, feeling light-headed and just not right. Called the doctor's office, the nurse said start drinking the fluids now. After chugging 2 bottles of water, I started feeling okay again. I had to go to Christiana today for Herceptin anyway so they checked my blood sugar when I was there. The blood sugar level was within normal limits by that time. So, I can't drink caffeine (makes my heart jump out of my chest), can't drink alcohol (made me feel extremely weird) and now no sugar. I cant have any fun!!!

I am also having trouble with coordination issues these days. Sometimes my legs don't want to go in the direction I want them to. I almost knocked Dawson over outside the other day when we were walking!! He goes, "Whoa, Mommy!" I joked with my mom that I am not drinking but I probably look like it when I am stumbling around. Just trying to tie my headband in my wig became challenging. I am having trouble with short-term memory right now too. I can balance my checkbook but I have no idea what happened to the piece of paper that was just in my hand!!

It is very frustrating to not be myself. I pray that this all comes back. I went to my cancer support group last night and one of the folks didn't recognize me. She said, "Is that Barbara?" I thought - I don't recognize me either.

Trip to Linvilla

Well, we went to Bunnyland yesterday at Linvilla Orchards - didn't blow away and had a great time!

Our boys just looked extra handsome today!

And it's gone.

We were having a movie and brownie ice cream sundae night at our house last night. We watched "Bedtime Stories" (much better for the boys than I thought it was going to be), had an itch on my head, and next a big clump. So, I had an extra bowl of ice cream in honor of it :) Once all were in bed, I had a good cry, sat in the shower, got comfortable and went to work. (We have a shower chair that I take in with me sometimes for the more wobbly moments). Most came out from the roots and then Dave helped me shave the leftover patches. The previous hair losses seemed to last for a week and I was not having that this time. I just wanted it done and wanted to move on. Before we would have been finding little hairs everywhere forever.

So, I have my new wig and some new hats and will go buy some accessories today. We are laughing because we wanted to take the boys to Linvilla Orchards later today for a bunny hayride and it happens to be a CRAZY WINDY day. I will NOT be wearing the new wig. Seeing it fly across an orchard and chasing it down is not how I want to spend my time. I have some hats with adjustable bands and it will be on tight!

Update

When I woke up from my nap this afternoon, my eyes landed on this picture. This was taken 10 years ago on the night we got engaged. Not a care in the world!!!!

We tried decreasing my steroids earlier this week (not a good thing to stay on for a long period of time) and found out today it was too soon. The flashes and pressure came back with a vengeance. So, the dosage went back up again. When you see me, my face is getting a chipmunk look to it which will go beautifully with the bald head I will have in the next week or so.



Here are boys, so excited with the Easter bunny.