Calm in the storm

Nothing like a visit with Dr. Vose to make serious things feel much less severe. After 20 months, I still haven't figured out if she really believes that things aren't as serious as they appear or if she just puts on the calm face knowing that worry and stress never help the situation. I guess when you're one of the best in the world, you've seen just about everything. Regardless, I always leave the appointments feeling like she's in control and knows exactly what needs to be done. She said that they still don't have the pathology reports back from my bronchoscopy but that it appeared the reaction was caught early. With time, she's optimistic that the damage can be reversed “maybe not 100% but pretty good” (but we all know that God is stronger than the steroids or the damage so I'll hold my breath for great!). For now, I'm back to weekly lab draws, monthly trips to Omaha and a 2 month steroid taper. Joy! As for daily life, she said that I could continue to do whatever I feel up to doing - right after I get my flu shot tomorrow!
As always, I can't thank everyone enough for the prayers, words of encouragement and support.

"I believe that I shall look upon the goodness of the Lord in the land of the living! Wait for the Lord; be strong, and let your heart take courage; wait for the Lord!” ~Psalm 27:13, 14

And now to the lungs...

I don’t have a ton of information, but figured I’d send out what I know to get the prayer train in motion! The pathology from the lung biopsies showed inflammation which is pretty non-specific so they’ll send the slides to Nebraska for a second opinion. But, the CT scan show constrictive bronchiolitis which can be a response to all the treatments – they aren’t sure of the severity or of the exact type but said that it tends to be tough to control and doesn’t respond well to treatments. Dr Vose has restarted all my medications including some extra steroids and I’ll be heading up to Omaha end of next week to see her. Not a great report, but as a good friend reminded me earlier this week, God doesn’t listen to the medical community and laughs at the “impossible”. He’s brought me through a lot of trials despite the odds and will not stop supporting me now. Please pray that once again God will show his mighty hand, give the doctor’s wisdom, give me peace to trust in His care, and that through it all, He will be glorified!
“For surely I know the plans I have for you says the Lord,.. plans for a hope and a future”

Renewed focus

Thank you for all your prayers! As has always been the case, God once again proved faithful and has given my heart peace over the current situation. The CCS retreat couldn't have come at a better time. Getting away and sharing with friends helped me regain my focus and put things in perspective. God continues to protect me and make His presence known. The theme of the weekend was “Free to Choose” - and for me that meant that I have the choice to trust in God's infinite wisdom or dwell on what I think is best for me. Once again, it felt like my daily devotional on Saturday had been hand-picked for me: “Even when God's plans at first sight seem to portend nothing but disaster, we have to see things with supernatural vision. There is a higher plane of existence which we do not fully appreciate. That ominous turn of events will perhaps serve as the necessary shadow in a beautiful work of art. After all, is not God's wisdom infinitely greater than our own?”
I am in a much better state of mind than I was Friday (even though today the doctor told me my PFT's look like those of a 70 year old man that's been smoking since he was 2). She also said that based on those, she couldn't tell me what was going on or if there was a treatment. They need to do some more tests so today I had a CT and tomorrow I'll have a bronchoscopy. We should have results by Thursday but I'm kind-of wishing that I wouldn't get them until after my trip to Boston.
“I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.” ~Isaiah 46:4

Another hill

This has been a hard week for me – not because I’m feeling any different than I usually do, but because, once again, the reality of where I’m at and what I’ve been through is smacking me in the face. My strength has been coming back nicely, I’m sleeping well, gaining weight, enjoying work, and as you know was ready to “re-enter” the world of sports, but this shortness of breath will not leave me alone. Initially I thought it was due to being out of shape, but as the weeks have gone on, it’s not getting better and doesn’t feel like being winded from pushing too hard. To no one’s surprise, I started myself on some asthma meds and inhalers to see if that would help and it’s really done nothing. So, after bringing the issue back up to Dr Vose, she decided that I should repeat some lung tests (PFT’s) to check my lung volume… (I’ve been doing these about every 3 months since I got sick and they’ve always been normal.) Yesterday I went in for the tests and this morning Omaha called to tell me that the results aren’t good, “severe restriction” of lung function. I’m presuming that it’s related to the treatments and the transplant, but no one really wants to tell me the outlook – permanent? Reversible? Progressive? All they would really tell me is that I need to see a pulmonologist. I have an appointment Monday which I guess is a good thing so that I won’t have to wait very long for some sort of answer. I’ve received a lot of shitty news over the past 20 months but have always had the grace to accept it and keep my spirits up. I pray that that will happen again, but right now I’m really having a hard time just making it through the day without crying. If I stop working or give myself time to think about it, the tears start to flow. For so long, one of my largest motivations to keep pushing was to get back in the game, back on the field. It’s been so hard sitting on the sidelines, watching everyone do what I used to take foregranted, but I’ve been able to because I believed that one day I’d be able to run again. I pray that God will not take that dream from me. So if you’d like to add another prayer request to your list, please pray that the doctors will have knowledge in how to treat this, that the damage to my lungs will not be permanent, that I will continue to trust God’s sovereignty, and that he will give me the grace and strength to accept whatever is to come. For now, I’m going to try and enjoy a beautiful fall weekend at the CCS retreat. I’ll update when I know more.

Anniversary of "Day 100"

It's hard to believe that it's already been a year since we were finishing up the 100 day stay in Omaha. A year ago yesterday, I was finishing up 2 days of testing and waiting for Dr Vose to give me her blessing. But more importantly, to tell us what we had all been praying for – that I was still in remission and the transplant was working. The anniversary of the day that I thought would never come, the day that I kept my eyes set on, the day that would symbolize my freedom. Freedom from treatments, freedom from daily doctor visits, freedom from my PICC line, freedom from cancer. For a week I've been trying to think of what I could blog- why this feels like such a landmark. Every night I’ve sat down to try and write, but nothing. I’ve prayed for something insightful, something inspirational… Nothing. Then last night I was at a charity dinner and a lady walked up, introduced herself, and asked how I was. She didn’t know much of my story, but said that she recognized my name from the adoration chapel at church and had prayed for me last year. What a blessing to have the opportunity to thank her, to tell her how much the prayers had helped (esp in my darkest times), and recount the miraculous journey. On the way home it dawned on me, when I think about “Day 100,” it reminds me how all of you, and so many others, have been by my side, praying at 7 and 10, sending messages; how God puts people in our lives to support us; how we’re never alone and He never abandons. Day 100 was a victory for all of us – we had made it. For 9 months, that had been our focus and goal. Obviously there have been many struggles in the past year and in some ways, 2011 has been harder than 2010, but Day 100 will always be a good reminder of how blessed I have been to have you by my side. Thank you!

September already!

Well, this week is a good example on how the best intentions don't always happen. Every night last week I planned to post an entry to the blog, but as you can see, I didn't manage to get that done. Oops. I survived Labor Day – my first weekend out of town this summer. We went to the farm and I was able to see a lot of family that I haven't seen in a long time. Even got to ride horses with Lisa on Sunday – wasn't sure that I'd be strong enough, but I'd have to say that it went rather well. My endurance is starting to pick up so my next goal is to play volleyball this fall. I'm sure it will be ugly, but I have to start somewhere! Next week I can get my 2nd round of immunizations which is great since flu season is quickly approaching and I hope to avoid all the crud. Hard to believe that a year ago I was fighting headaches and a myriad of other problems while counting down the days until I'd be able to leave Omaha. Now I'm looking at deadlines for volleyball leagues and hoping to get grass seed planted before it's too late! Not to mention, gearing up for football season! Pretty soon I'll be able to report on my first haircut. But I have to admit that it's kind of fun now because when people comment, I can tell them that God is my stylist.

"The Lord is my strength and my song..." ~Exodus 15:2

Trip to Omaha...

Before the holiday weekend, figured I'd send a quick update. Our trip to Omaha proved to be another successful day. My labs were better than I had expected – hemoglobin and platelets were almost in the normal range! Dr. Vose seemed pleased with my progress and decided that I didn't need the CT. (I'm not disappointed to have avoided that radiation). Another 3 months before I'll need to go back – maybe the flood waters will be down by then! I've felt ok as of late. Still a little bit of burning from the shingles and the stomach continues to have it's ups and downs, but nothing that's kept me from going to work and doing what I need to do. I pray that my endurance continues to improve. (slow and steady wins the race). Have a wonderful and safe holiday weekend! As for me, I'll be spending it with family.