Thursday, March 11, 2010

Hello to all our friends and loved ones,

Here is a long overdue update on how I’m doing. I go to Karmanos every other week. They draw blood and if everything looks good, they decrease my medications by 2 pills. 6 weeks ago, my liver enzymes went up so they increased my steroids to 8 pills per day. I now am down to 2 each morning and hoping on my next visit, March 19th, they will take me totally off them. That would be the first time since my transplant on Oct. 9th that I haven’t been on steroids. It just goes to show that Graft vs Host Disease (GVHD) is continually a challenge. After 100 days they call it chronic GVHD that comes on very slowly and it usually likes to attack your organs like your liver, intestinal tract and kidneys. Sounds pretty scary, but the good news is my GVHD has reared its ugly head twice affecting my liver and responded very well with the steroids. Hopefully my next visit, if everything is still stable, I will begin once a month trips to Detroit. Yea! The downfall to that is my meds are only reduced at my appointments and since I am on 42 pills a day, it will be years before I am weaned off them all. We’re hopeful to start an every other week blood draw here in Lansing and have the doctor adjust my medications over the phone. Until they can reduce my anti-rejection/immune suppressant, (I take 26 of those a day) I still have to avoid groups of people, anyone who has a cold, and wear a mask out in public.

That’s kind of an update for the past 8 weeks. I’m great, but get a little tired in the evenings. I’m fighting a little head cold but as long as it doesn’t come with a cough or a fever, I’ll be fine. I walk 4 miles, 3 days a week and with the weather in the 50’s the last couple days, I’m hoping to walk outside in the evenings. My skin color is still a little brown and blotchy; I eat almost everything except Caesar salads or things containing raw egg. Bacteria can be very dangerous.

I was blessed to have my Hickman catheter removed 2 weeks ago which was used for Magnesium supplements due to it being depleted by one of the immune suppressant meds. After waiting 7 days for the skin to heal, I was able to put my whole body under the shower for the 1st time since Oct. 2nd. Life is good!

On to more praises, I have hair!! I’m sporting about 1 ½” of brown on the top. You can’t see any on the sides but it’s there – all gray! I still wear baseball hats instead of my wig, even to church. The bright colored hats look a little better with the mask on my face. When I wear my wig people think I have some contagious disease. I was even asked in Meijer if I had H1N1. My finger nails have all fallen off and new ones are ¾ the way there. They look as short as Steve’s. They might be long enough to polish for Easter – I’ll pick a color that matches my cool lipstick that one of Steve’s cousins gave me.

I’m doing most of the laundry, all the meals and most of the shopping again. The kids still clean and vacuum since the chemicals and dust could be a problem with my lungs. Every food tastes normal, well almost. I have always loved tomatoes in any form and I can’t even stand the smell of spaghetti sauce - Go figure!

I’m so thankful that I can drive again. As I was sitting in the van, with the window down I was reflecting on how blessed our family is to have such wonderful support and amazing pray warriors who got us through 2009. I can’t tell you how emotional I get thinking of each of you and those I don’t even know, who have made meals, sent cards, verses, taken our children to all their activities, brought gifts and faithfully lifting us to the Lord. I know how long those prayer lists get and how little time some of you have each morning. This ordeal has changed us forever. I know my odds of surviving the leukemia weren’t very good and I was so sick sometimes, it would have been easier to give up. Steve would update the blog and the body of Christ would begin to pray and obviously God wasn’t finished with me yet. Thank you.

We have been asked by so many, “Have you ever wondered why both of you got cancer within 3 weeks of each other?” I was definitely too sick to answer that question clearly, but would love to share some of my thoughts with you now. I know Steve has so eloquently put it in so many of his blog updates that we believe God has the power to heal. Either by a miracle or by the gifts he has given man through medicine. We pray for complete healing of our cancers through either means and we will give him all the glory. We are also aware that healing is not God’s plan for everyone. I know many who have been spared and many whom the Lord has called home. Either way, God had His plan and purpose in each situation, some of these we may never understand this side of eternity. Isaiah 55: 8-9 “For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.” This tells us that even when we think we know best, God sees far beyond my trial. God saw those molecular developments in our bodies changing into cancer and he could have stopped it, but he chose not to for our own good as well as others. Our family has come face to face with death and we have reflected on it a lot earlier than I think our kids wanted us to.

I was reminded by a friend of an article by John Piper called, “Don’t Waste Your Cancer.” He wrote this on the eve of his own cancer surgery in Feb. 2006. One of the points in the article talked about how it would be a waste of cancer if we didn’t think about death. Psalm 90:12 says, “Teach us to number our days that we may get a heart of wisdom.” Numbering our days means thinking about how few there are and that they will end. How will we get a heart of wisdom if we refuse to think about death?

His last point in the article talked about how it is a waste of your cancer if you don’t use it as an opportunity to show others the truth and glory of Christ. Luke 21:12-13 says, “They will lay their hands on you and persecute you, delivering you up to the synagogues and prisons, and you will be brought before kings and governors for my name sake. This will be an opportunity to bear witness.” Steve and our family have tried to take this opportunity to show you that this trial only draws us closer to Him. His promises are worth more than life itself and we definitely don’t want to waste it.

As you each face your trials, know that you are not alone. You will have the help you need when you call on Him. Philippians 4:19; “My God will supply every need of yours according to his riches in glory in Christ Jesus.” As I said at the beginning of this post, this was long overdue update. I probably should have said this is an overdue update that is long. Sorry for the length.

God Bless You,
Love Bonnie (and Steve)

P.S. Just wanted to remind you that another one of Steve’s cousins is running in a marathon to raise money for the Leukemia and Lymphoma Society. She continues to raise support for this cause. If you are so inclined to do so, you can visit her website, learn more about making a donation.