Saturday, March 20, 2010

"It's a lovely day..."

Not long ago there was a commercial on tv that was sweet. Dwight taught Deborah the words to the song and they would often sing it together. Today the sweet little lady was walking around the house singing ... "It's a love-ly day to be together. I doubt that life can get any better."

So sweet!

Friday, March 19, 2010

The Stander

David from All Star Medical brought over a Stander today for us to try.

We put Ryan in it and he did really well. He seemed to be very content, maybe even enjoyed it.

Ryan's will be a beautiful green and we should get it in a couple of months.

Thursday, March 18, 2010

Another Sweet Blessing

Today one of my friends dropped off a car seat that she thought Ryan might be able to use. It looks brand new and I think it will work great! It was such a thoughtful thing for her to do. I felt so blessed!

She also stayed and visited for a little while, which I really enjoyed. She had her little boys with her and one of her sons is about 6 weeks older than Ryan. It was so fun to see him playing and moving up and down the stairs with such ease.

Some people have asked me if it bothers me to see other children close to Ryan's age playing and advancing. I have several friends who had kids kids within a month or two of Ryan's birth. It was hard at first, like when we first started to realize that Ryan was having problems. Now, I think it just makes it seem more joyful to see them. I realize what a blessing each and every little milestone is.


And, I must admit I also smile when I'm sitting quietly next to Ryan at church while their chasing their little munchkins. ;)

My sweetheart

Last night I had a tough night and my sweetheart rubbed my back and neck for quite a while. Then this morning at 5 something, he realized I was awake and hurting. So, once again, he spent about 30 minutes rubbing my neck and shoulders. What a sweetheart!

Feeling a little better this morning, other than my mouth. I can barely swallow. My mouth feels almost raw and I have a sharp pain that happens on the sides of my mouth whenever I put anything, even water, in my mouth. Not fun.

I naively thought that since Tuesday wasn't a bad day that it would only get easier. I'm thankful that it's limited to what I'm feeling and it's not worse than it is.

Thanks for your love and prayers! And, Dwight, thank you! Thank you for being my sweetheart!

Wednesday, March 17, 2010

I love my friends!

I'm so blessed with great friends! I just wanted to let you all know. Thanks for all the yummy foods, the notes of encouragement, the prayers, the phone calls, and, of course, for the cute toes!
I love and appreciate you all!

Keeping it honest...

I want to keep an honest record of this cancer journey.

Tonight I found some pictures I took following the Prednisone call on the 12th. I didn't post them because they aren't very flattering. A few of them show how much I really struggled with that call. The first was taken just seconds after hanging up the phone. I had been setting up the camera to show you my new hair color. After the call came, I tried to pull it together enough to go ahead with the pictures ... well, you can see for yourself... keeping it honest.

Thank heavens for little munchkins. I am so blessed with very empathetic, caring children!

(Maybe some day I'll be cool like some of my other blogging friends and will know how to create those cool picture collages.)
Last night was good. Today my mouth is painfully sore. Pretty much anything other than water hurts. I think it's the saliva glands that is causing the problem. Not sure though.

On other fronts, I thought I'd share with you some pictures of the new equipment that we're ordering for Ryan.

This first picture is a bath chair. It looks bigger than I expect it to be. We're having a tough time bathing him now. It really takes one person to hold him and one person to clean him. This chair will make it possible for me to bathe him without needing extra hands.The picture below is a "stander." It will help Ryan to get used to pressure/weight on his legs. Hopefully, we'll be able to strengthen his legs so that he can stand eventually. This comes in other colors than just pink, thankfully. It also comes in blue and green. Can you guess which color we'll be ordering? :)
The next picture is a KidKart wheelchair/stroller. They brought one like this over for us to try last week and I loved it. The only problem is that Ryan will probably outgrow it in 1-2 years and insurance will only cover a new wheelchair every 4-5 years. Since they cost about $4,500-$5,000 we think it'd be better to buy the next step up.The "Gizmo" is definitely more wheelchair than stroller like. But, it can be adjusted to fit him perfectly now, and can later be adjusted to fit him as he grows. The best part about getting Ryan a wheelchair/stroller is that it will give him a lot of trunk support and help him to stay in the best position for his little body. And, yes, it does fold and will fit in my van trunk; however, it does weigh about 20 pounds.
They are coming over again this Friday to measure him for all the equipment and then we should be ready to place the order. I hope it doesn't take long to get it. Next, I need to find a good car seat for him. He is a half pound from outgrowing his infant carrier car seat. His next car seat will need to still be rear facing.

Anyway ... I'm going to go play a game with the munchkins and see if I can rest a little. I feel a bit tired and unusually irritable today. I think we can thank the Prednisone for the irritability. And, maybe being tired isn't helping. I have a bad habit of just trying to push through being tired. I should probably just rest instead of pushing. I suppose that's one of the "lessons" I should be learning from this. :)

Tuesday, March 16, 2010

Today has been better than I would have expected. I hope the night is good as well. A few digestive issues, but not too bad. The main thing I've noticed is that my mouth ...

Well, have you ever eaten too many salt and vinegar chips, or too many sour patch kids? You know that almost raw, wondering if you'll ever be able to taste anything again feeling? That's what my mouth feels like.

And, I have this weird metallic like taste in my mouth, but it's not constant. It kind of comes and go. Water seems to really emphasize the taste. It almost tastes like I'm drinking a thin liquid metal. Weird.

But it could be much worse. I'll take the mouth stuff. Definitely better than last night's events.

Thankful for the morning.

I was up for about 3 hours last night unable to sleep. I wanted to read to find comfort, but my head hurt too much.

As I tried to find the perfect position to make my head hurt less, many scriptures came to mind that brought comfort. I'm thankful for the Holy Spirit. I'm thankful He's a comforter. I'm thankful that I was taught to study scriptures. I'm thankful for the image I have in my mind of my father reading his scriptures on the chair in the corner of his room in the dark hours of the early Indiana winter mornings. (Dad, did you know that's why I love my milking chair so much. It reminds me of my great spiritual heritage.) I'm thankful for the image I have of my mother reading her scriptures at the dining room table. I'm thankful for teachers who have helped me to love the scriptures and especially for my sweetheart who helps me to study them more effectively. But, most of all, I'm thankful that in the quiet hours of my discomfort that the scriptures that I find most comforting came to my mind, reminding me that He loves me and is aware of me.

"Peace I leave with you,
my peace I give unto you:
not as the world giveth,
give I unto you.
Let not your heart be troubled,
neither let it be afraid."

"And then, if thou endure it well, God shall exalt thee on high."

I thought about Jesus in Gethsemane. Even he, the greatest of all, said, "If it be possible, let this cup pass from me..." At various times of my life, I have personally learned of and felt the power of His Atoning sacrifice in different ways. I have felt the strength of the atonement in overcoming my sins and weaknesses. I have felt the strength of the atonement in bearing the burdens that others have placed on me. I have felt Him carry my griefs.

I am now learning more than ever before of how his Atoning sacrifice allows him to help in sickness. One of the Lord's apostles, Elder Neal A Maxwell said, "Jesus knows how to succor us in the midst of our grief and sicknesses precisely because Jesus has already borne our griefs and sicknesses. He knows them firsthand; thus His empathy is earned."

I do not profess to understand how that was possible, but I know it really happened. I don't know how He withstood every person's grief, sins, and sickness, but I'm thankful that He did. I'm thankful that because He did, He truly does know how to succor me. And you.
Vomiting. A lot.
Anti-nausea meds not working.
And, oh, my head.
Prednisone in the morning. Ugh.

Monday, March 15, 2010

Chemo #1

Ally and I met Sarah, Chrissy, and Mary for breakfast at Magnolia Haus this morning. Thanks, ladies! It was a great start to my day!

Following breakfast, Ally took me to my appointment. When I arrived at the treatment center, Susan (my assigned Nurse) and LaDonna (the Nurse Supervisor) both called me back and spoke with me in the whole. LaDonna was there to deliver some "bad news." I was worried. Two things. Howevever, the first was a little expected: I need to get a port for treatment. (I'll tell you more about it soon.) The second was that the Dr had forgotten to write up my treatment orders and he's on vacation. Nice.

Ally and I prayed that we'd be able to go ahead today. LaDonna said that if she could get the vein we'd do the treatment. If not, we'd need to get the port first. Thankfully, she was able to get the vein with one stick and a little digging. Not fun at all, but better than having the anticipation of this stuff for another week.

Then we had to sit and wait while LaDonna called the Dr on vacation. I'm so thankful that she was willing to do that for me. After just a short time, or at least it seemed that way while I visited with Ally, the orders were given and she hung the first bag of chemicals.

When it was time to put in the 2nd chemical, she needed to pull back some blood thru the IV line to make sure it was placed perfectly. The 2nd drug is very toxic and can blister and burn any tissue it touches outside of the vein. (Scary.) She was unable to pull back enough blood to feel comfortable with putting it in that vein. So, she had to start a 2nd IV. Since it was just going to be required for a few minutes, she did it in the elbow vein. I love it when they do it there ... at least as much as any sane person can "love" getting an IV. It just doesn't hurt as much as other places.

So, she was able to place the 2nd IV quite easily and she pushed the drugs into the IV line with a syringe and then flushed it with the rest of the 1st meds ... or maybe it was saline. I don't remember for sure.

Anyway ... So that's why I need a port. I have very non-cooperative veins. A port is basically a valve that they place in the chest that has a tube going into a vein. Similar to Ryan's mic-key port, only mine will go into a vein instead of into the stomach.

I felt fine leaving the place, although I did notice a weird feeling in my mouth. It's kind of a mix between tickling and swelling and fuzzy tongue feeling. It's weird. That's still going on. The other thing is about 4 hours after chemo, my head really started hurting. It's a different kind of headache. Intense, but it's like a column of pain that starts at the top of my head just above my eyes and goes down the middle of my head onto my neck. My neck doesn't hurt as if I had laid on it wrong or pulled a muscle. It hurts like a headache hurt. I've never felt such a thing. I also have a slighly dizzy feeling. Not full dizzyiness just enough to be unsettling.

As for stomach, it has felt fine all day but tonight it's starting to feel a little weird. I've opted to take an anti-nausea pill to just avoid the whole pukey face night.

I am really tired and want to see if some peppermint extract and rest will help with this headache. But I wanted to make sure I posted this tonight so that all of you wonderful people who are praying for me will know how much I appreciate your prayers and your thoughtfulness. I believe that my strength and my families' strength comes from God and I know that He has blessed us so abundantly because of the prayers of the faithful, because of you. I know that He will bless you, too.
It's almost time. Less than 2 hours from now they'll have me hooked up.

Last week a friend of mine brought me a book, "A Disciple's Life." It's a biography about Neal Maxwell, a great spiritual leader. He died from Leukemia a few years ago. If you haven't read it, you should get a copy and read it. He makes it seem like a privilege to go through adversity. He recognizes it's hard ... he spent 46 days in isolation while being treated for the Leukemia ... but he speaks of the spiritual blessings. The way he speaks of the spiritual blessings almost makes one long for the opportunity to be so blessed.

I don't know if that'll make sense to you, but read it. It truly is an inspiring book.

I'll let you know how things go today. Thank you all for your prayers and for all your support. I can't imagine doing this without you!

Sunday, March 14, 2010

Best Nephews Ever

Tonight I received a text message from my nephews Kevin and Jason wishing me good luck with tomorrow's chemo. It included a picture of Jason ... he has shaved his head in support of me. Isn't that the coolest thing ever??

I'm so blessed to have 3 great nephews! If you don't know Jason, Aaron, and Kevin, you are really missing out.

Aaron, I hope you are feeling better. I look forward to hearing how your day goes tomorrow. Please call me to let me know what you learn.