Funny Kids

Ethan has started blowing raspberries today. The funniest thing is that when Ely (Christine's little 2 month old) burped an Ethan-sized burp, Ethan laughed out loud. Can you believe that it's starting this early?! Oh no!

Anderson woke up with a belly ache. I asked him if it was because he was hungry. He said it was. I remembered that he didn't eat a whole lot for dinner, and he reminded me that he didn't have dessert. He insisted that "no dessert" was the reason for him being hungry. "Actually, I didn't have dessert all week!" he remembered. Poor child...and no, don't believe him. His desserts were during the day rather than after supper.

Lyndsey told me she was going to comb my hair. I asked her how she would do that since I don't have any. She said, "I'll comb yours sparklies" very matter-of-factly. So, we sat on the couch, and she combed my head. She then proceeded to try to put barrettes in my hair! As she was working at it, I could hear her whispering to herself, "Put the barrette in the sparklies." Good luck, Lyndsey! She ended up giving up and putting them in her hair.

Wakeful Thoughts

Yep, it's the wee hours of the morning, and I should be asleep. Unfortunately, chemo can have that affect - sleeplessness. I've taken medication the last few nights but am trying to fight it tonight, especially since I didn't nap earlier today. Ah well, I guess this is the time for this blog entry. Good thing my snoring hubby sleeps soundly. 8)
I'm listening to my iShuffle (thanks to my cousin, Melissa!), and the song that came on (Casting Crowns, I believe) made me think of a blog entry that has been brewing in my mind for weeks now, basically since last methotrexate treatment. The song says, "...And all the tears I've cried, You hold in Your hand. You are Who You are, no matter where I am." These words about God's tears have new meaning to me, particularly in light of a sermon that my cousin-in-love, JeriLynn, shared with me. Her pastor is doing a sermon series on the beatitudes (blessed are the... for ..., in Matthew). The one she was sharing about was "Blessed are those who mourn, for they will be comforted". [JeriLynn, I won't do this justice, and I'm working on the memory held by chemo brain, so please feel free to add to the comment section for this post with more details.] Anyway, some "notes" on this truth from God. Blessed - a concept very familiar and common in the Jewish culture. They would "bless" people, food, perhaps as an expression a step beyond thankfulness? "Blessed" is a good thing, a recognition of God's demonstration of His goodness. Anyway, mourning leads to comfort. As I was thinking about this, the verse in 1 Cor. comes to mind where we comfort with the comfort we have received. I have definitely experienced this on both ends; receiving and giving. We will definitely have a new level of giving comfort through this whole experience. How much better is the comfort that, rather than from man, we receive from God Who knows us intimately - our truest needs, hopes, disappointments, the very core of our being for He lovingly and uniquely created each one of us. That leads to the last (and biggest, in my mind) thought...God mourning. When Jesus died on the cross, He was separated from God because of the sin that was yours and mine that He took upon Himself, bearing the consequences. When this happened, the thick curtain that separated the Holy of Holies in the tabernacle from the outer region was torn in two. This kind of tear didn't just "happen" because the material was worn; it was an expression of God's sorrow, His mourning. Think of King David and how he mourned (in step with Jewish tradition). He covered himself in ash, tore his clothes, put on sackcloth. Well, the curtain tearing was God "tearing His clothes" as He mourned (as well as symbolized the removal of the separation that our sin created from relationship with God, made possible by Jesus' sacrifice). This thought has been eye-opening for me as to the level of God's understanding of my human experiences with grief. Obviously, He's God; He understands. However, I think that there was a part of me that doubted His level of understanding...crazy me. And the good news, God's mourning over separation from His Son didn't stop there. Jesus conquered death and the weight of our sin! He rose from the dead and was reunited with His Father in heaven, preparing a place for you and me if we choose to recognize our need and Jesus' ability to free us from our sin. Thank God that He is not still mourning and that we can be in a relationship with Him.
Now back to sleep, I hope.

Chemo Escapades

We left the house Tuesday at 11:30 to have time to drop off kids in Maine and get to Boston for around 3:00. Upon arrival at 3:30 (after a yummy stop for ice-cream - first time I've wanted it since chemo started), we were informed that they had tried to reach me to tell me to go back home until tomorrow. The patient in "my room" had not been discharged. So, plan B was to have me use the room that was being serviced, except that the newly waxed floors were giving off a lot of odor. Plan C was to wait for a patient to be discharged at midnight and wait for his room to be cleaned (ready around 2 AM). The thought was that we would wait in the solarium (normally a waiting room for friends and family) for 2 hours. That turned to 3 hours, which turned to 4 hours. The solarium was closed off to others as my port had been accessed, and the view is great. The temperature wasn't though. Finally, at 9:00, they rolled a hospital bed into the solarium for me to rest in and so Mom could lie down on the couch. By that time, I was exhausted and had a headache (still no chemo). At 10:00, they decided to try plan B if I could stand the fumes. I checked it out and decided it would be fine. I started chemo at midnight, which ended at 4:00 or so. I did sleep off and on, but it was quite the crazy night. The nap today was much needed. (The staff felt awful and gave us some vouchers for parking and flowers.)

A death in the family

While Mom and I were in the hospital last week, Bob handled a death in the family. Lyndsey's precious baby (boy) doll "Abby baby" (named after her friend, Abby, who gave her the doll) lost his leg for the second time. (The stitching holding the plastic leg to the cloth body let go.) We had seen this was in the works and weren't sure how to remedy the situation. Aunt Paula tried resewing it, but it didn't work. So, Daddy told Lyndsey that it was time to throw Abby baby in the garbage. He didn't leave her any choice but compassionately helped her pray for Abby baby to have a safe trip to the dump. 8) Lyndsey did fine with it, even after Aunt Carol mistakenly put Abby baby's overalls on Ethan the next day. Lyndsey noticed but was more confused about it than upset.

Adventures in Babysitting

We have really enjoyed having my cousin, Denise, helping us on Mondays. Since Denise's "children" are her kitties, she's been having a lot of fun and learning a lot. Ethan has been initiating her in the ways of babies, particularly with regards to spitting up. The first week, Denise used the burp cloth sometimes and ended up with a shirt and lap doused in stinky spit-up. The next week, she laughingly pointed out that she now knows the importance of a burp cloth at all times. Well, Ethan managed to miss the burp cloth and land his spit up on her arm, butt, leg, and the floor. It was a magic trick we didn't figure out. The third week, Denise got smart and brought a change of clothes with her. (Nobody likes smelling like spit up all day, especially the kind with formula in it-stinky!) Well, she didn't even need them because she was prepared! Isn't that just like motherhood?! As she was leaving, I had Ethan on my lap and realized he had pooped out the diaper, onto his cloths, and leaked onto my cloths. So, it happens to me too! 8) At least Denise missed out on that one!

Medical Updates

The blood transfusion went well and I'm still feeling the effects of it. I am thankful. I tire but haven't been napping every afternoon. My activity levels have been a bit higher than normal too. Dr. Choy says that we need to minimize the number of transfusions, for those of you who are wondering. Also, he said that I'm not supposed to rebound as quickly from treatments on this last stretch as my body has been beaten down so many times. Let's pray that God will prove him wrong. 8)
Weird things are happening with my hair. The hair on my legs STILL has not fallen out. Doesn't that seem like a cruel joke? (I guess it doesn't really matter since I'm too cold to wear shorts anyway, except today.) The hair on my head is all new stuff, evident by the lighter color and the soft texture. Apparently, it grew in while the older hair was falling out. Don't get me wrong; it's very sparse. However, it's encouraging to see my hair growing. (This next treatment will knock it out again.)
My body seems to still be battling thrush. I finished the medicine for it and even though it hasn't come back full-force, I believe I see/taste evidences of it. I'll talk to the dr. about it this week when I'm back in Boston.
I had a physical therapy appt. 2 trips to Boston ago. She gave me new exercises, which is good. They're definitely challenging. Please pray that I will be diligent doing them. This is very difficult. I have also given up the crutch for a cane. It's more challenging to use, but I think it will help me stop some bad walking habits. The problem is, I can't lean on the cane when I'm tired!
My appetite seems to be pretty good. The taste buds are a bit more normal. Last night, I ate a lasagna and ENJOYED EATING!! It was a mean lasagna. I actually had 2 large helpings and a lot of pieces of bread (and salad). This was very encouraging.
The ringing in my ear(s) is still there, so Dr. Choy has decided to reduce the amount of cisplatin (chemo drug) as it can cause hearing loss. I don't think I've lost any hearing capacity, but I'm glad the dr. is listening (can't say I care for the ringing in the ear either).
My shots are going well. Yep, the one a day isn't bothering me (with EMLA cream). Woohoo!

Ethan Wakes

Ethan loves to wake up very slowly. I finally got some footage of it. I think that the total wake-up time, with some prompting, was 15 minutes. I didn't tape every minute of it, but if you want to see some cute baby footage, check it out. Note that even though it had been over 10 hours since Ethan had last eaten, he didn't cry for his bottle. God has so blessed us with an easygoing baby.

Blessings Abound

OK, the scoop on the transfusion is that it went well (took over 7 hours), but I didn't feel like a "new woman" until today. [Today I actually did some scrapbooking!!!! Woohoo!!!! This is the first time since chemo started and was very encouraging to me to have the energy to delve in.]This delayed energy surprised me, but God was so good about helping me maintain perspective and rest in Him. Holidays can be especially tough, especially when I don't have the energy to celebrate like I'd like. However, 4th of July was alright. We ended up going to a party with friends late in the day and saw some great fireworks. I forgot my crutch at home (how's that for chemo brain?) but managed without it. For a few minutes of the fireworks, I forgot that life isn't really normal right now. Thank You, Lord.
I was also really encouraged at the party, besides being with friends, in that I met somebody whose brother-in-law had the same rare cancer as me. Ten years ago, he found a dr. who would remove the bone with the tumor (which was encapsulated like mine) rather than amputating his leg, and he has been cancer-free ever since. This was really good to hear about and made me feel hope since most stories seem to be about people whose cancer comes back at least once. It also made me thankful that my cancer happened now rather than 10 years ago! My oncologist had told me that chemotherapy and such has come a long way, and this is a prime example.
On a different note, I thought that after my last treatment (last cycle), the cells on my tongue were dying and sloughing off. My tongue turned white and felt like it had been burned leaving little taste. Well, I "happened to" mention it to my nurse this last week, and she informed me that I had thrush and that it could have gotten really bad, going down my throat and into my digestive tract. Thankfully, God spared me from that. It has started to come back again, so I'm taking Nystatin. It's a disgusting mouth rinse that I'm really thankful I don't have to swallow. Hopefully it will truly kick the thrush as I suspect that last time, my body only got the upper hand for a while instead of truly overcoming it (due to the lowered fighting power of my immune system).
Lastly, my shots have been going better. The dr. changed the prescription so that I only need 1 shot per day. I'm not sure if Bob is getting better at giving them (he's been reading up on how to make them less painful) and/or God's been gracious in relieving me of the high stress of it. Regardless, I'll take it. I'm so thankful to not be struggling with that right now. Thank you for praying!

hospital update

quick thoughts...so tired. Still in hospital for blood transfusion...scheduled for tomorrow 6 AM hopefully. A. Carol just left, Bob here soon. God is sustaining me.