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Another day, another chemo

Thursday, July 7, 2005 6:51 PM CDT

Hi everyone!

Chemo day...always good to see Alex's face. Makes the trip to the dreary basement worth it.

Good news, Dave's blood counts are hanging in the barely okay range. He got CPT-11 and avastin today. His eye is still bothering him, we'll be making an appointment with Dr. Poff, his optometrist. Dave's having a lot of "drippy nose" and blowing his nose a lot. Last few days that's been bloody, a concern because of avastin and blood thinners. So far, nothing too severe, but we're watching and praying about this. Doc gave him some allergy meds, hopefully that will help.

Dave's been sleeping 18-20 hours a day. Seems to be most awake at night after 11:00 or midnight. He's like a newborn, got his days and nights mixed up. Doc gave him some ambien, hoping to turn the schedule around. Dave doesn't want to take any more pills. In fact, that's always been an issue, and is now huge. With his short term memory being, well, pretty much blotto....he's always arguing with me over meds. Always insisting he took them. Luckily, he's only got the tegretol to take for the most part (anti-seizure meds). He's almost weaned off the evil decadron. And once he's off decadron, he can stop the pepcid.

Having some trouble with what Dave calls SAD...Sudden Acute Diarrhea. Poor guy. He's also losing weight pretty rapidly. Partly because he's never awake to eat!

So, all you faithful prayer warriors, there's a whole laundry list of pretty minor stuff to pray for. There's also a biggie. The right side of Dave's face is drooping again, showing some paralysis. It was quite pronounced before surgery in Jan 05, and got better after the surgery. It's the tumor invading the motor fibers on the right side. It also affects his left leg, which tends to drag. The leg has been pretty much the same since Jan, tends to be worse when he's tired. But the facial paralysis had gotten a lot better, and today it's worse again. This could be tumor growth, or it could be swelling. If it's swelling, we might have to up the decadron again. Ick. But better than the alternative.

The other thing is, all of this could be due to the gamma knife he had 5 months ago. They said that in 3-6 months, he might have extreme fatigue and the same kind of symptoms that he had with the tumor. So it could also be due to those cells dying off. We hope that's the ticket. Necrosis is nasty stuff in and of itself. The hope with necrosis is that eventually the body will dispose of those dead cells, and necrosis is pretty self-limiting, unlike tumor growth, which continues unchecked. During the last surgery, much of what they thought was tumor growth turned out to be radiation necrosis from the Aug 05 gamma knife. Only time will tell. The August MRI may tell us something, but not necessarily. Necrosis and tumor growth look much the same on an MRI. Sometimes an MRS (Spectroscopy Imaging) or PET scan can tell the difference, but not always. Guess we'll cross that bridge when we get there. Doc considered doing a scan now, and decided we could wait until August.

Zach's All-Star baseball tournament starts tomorrow. He's very excited. The tournament is in Kennewick. They have a game at 1:00 and if they win, one at 7:00. Then the games Sat and Sun will depend on if they win or lose. It's double elimination and the championship game is on Monday. Yay! We get to watch more baseball!

Dave took a message from the pediatrician. It looks like Zach's test was positive for pertussis. No wonder. The good news is that whooping cough is most contagious in the first week, when the patient has the cold symptoms: runny nose, sore throat. Well, that was clear back in May. They say that after three weeks it's no longer contagious, so we're past that. Mindy is watching Caleb and Annalee closely, since small children are more at risk, especially if they've had some but not all of the pertussis vaccine series, usually completed with a booster between ages 4-6. For children who are vaccinated, the immunity wanes around age 11. Luckily, whooping cough is not a terribly dangerous or debilitating disease for older children and adults. It was WAY easier than chicken pox! Way! I asked the doc about Dave being low on white cells and if this was a concern. He said, nope, that if Dave was going to get it, he'd be showing the signs a while ago, so we can assume he's safe.

I think that's all the news for now.

I've been struggling with positive attitude lately. Fatigue leads to impatience for me. This is a long journey, a marathon, and I've spent much of my time sprinting. It's catching up to me. Letting go is not my strong suit, I'm quite the control freak. I know, this may surprise you. HA! There are some things beyond my control, however, and I've been beating my head against a brick wall, trying to make things something they aren't. Did I tell you acceptance is one of my weaker suits as well? I think this has benefitted Dave over the years in this war. I've left no stone unturned in this figth. I've spent dozens of nights with no sleep, talking to people all over the world, learning as much as I can. Doctors, nutritionists, patients, herbalists, homeopathic doctors, faith healers, pharmacists, nurses, acupuncturists, caregivers, authors, the list goes on. We've been in battle mode for over eight years now--no holds barred, full boar for over two. (To say nothing of the parallel battle we wage with autism!) I guess I'm just sensing the need for a change to happen within me. I keep waiting for normal to return. (Yeah, I know, how normal was it EVER around this house?) I'm not adjusting, I'm fighting and stalling and kicking and screaming. (The kicking is mostly inside. The screaming actually happens.) I guess I'm struggling with a lot of really big issues right now. And I think, as always, I am the foil to Dave. He's so tired, he has no trouble with living in the (awake) moment, and just being. I'm used to seeing more spark, more fight. So I try to pull it out of him. And get more intense about, well pretty much everything. And I'm pretty intense to begin with. Anyway, I need prayers from you all. Prayers that God will set my path right, that I will recognize what is "resting" and what is "giving in." That I will know when to push and when to just relax. That I will learn to smile and laugh with Dave when he buttons his shirt cock-eyed or forgets who he's talking to on the phone in the middle of a conversation or breaks another plate because he forgot he was holding it....instead of sighing with exasperation. He takes it all in stride, finding enjoyment in all things. I so wish I was more like him.

It's interesting, there's this movie floating around cancer circles: www.thesurvivormovie.com It's a great little clip, meant to be very inspiring. The main theme is "I have cancer, but cancer does NOT have me." Which is a wonderful, positive attitude. I like much of the movie a lot. It's a little short in the faith department (to quote my good friend, Laurie), but okay. But there is this one thing that BUGS me!

~Caveat~ I am the first to acknowledge that positive attitude, and making the best of what comes your way is key. That some of us are dealt some pretty crappy stuff, and if we have faith, God will help us bring good from that. Wonderful things, wonderful people have come into our lives because of cancer. Don't get me wrong.

But there's this part in the movie that talks about cancer being a "lesson" and that when we have a setback, it's an opportunity to relearn the "lesson." Kinda sets my teeth on edge.

I don't believe that God or fate or anyone or anything sent this horrible disease to us in order to teach us a lesson! We all learn from what happens to us, if we are open to it. But the idea that cancer is a lesson bugs me. Makes me batty. (Okay, I revised the cuss words out of that....this is a G-rated website after all.)

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. For those God foreknew he also predestined to be conformed to the likeness of his Son....Romans 8:28-29a


For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future....I have loved you with an everlasting love; I have drawn you with loving-kindness. Call to me and I will answer you and tell you great and unsearchable things you do not know. Jeremiah 29:11;31:3b;33:3

Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword?...No in all these things we are more than conquerors through him who loves us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation will be able to separate us from the love of God that is in Christ Jesus our Lord. Romans 8:35,37-39

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. II Corinthians 4:16-18

I have learned to be content whatever the circumstances....I can do everything through him who gives me strength. Philippians 4:11b-13

And these, that do remind me that God will use our earthly suffering to bring great things, if we have faith in Him.

..."My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. II Corinthians 12:9b-10


Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade--kept in heaven for you, who through faith are shielded by God's power until the coming of the salvation that is ready to be revealed in the last time. In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith--of greater worth than gold, which perishes even though refined by fire--may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy for you are receiving the goal of your faith, the salvation of your souls.
I Peter 1:3-9

Waxing philosophical today.
Clinging to the promises, claiming Dave's perfect healing, fiercely praying for that perfect healing to happen here on earth, feebly trying to make my will, my desires reality.

Shelley

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