Merry Christmas 2011!

Merry Christmas! (a couple days late). The past week has flown by in Kansas City – each day after work, I'd head to Mom and Dad's for dinner and to hang out with the family. So it's been very full days of family, food and lots of games! Keith is still in town for another couple days so the fun continues - at least a little longer! I'm so grateful that I've been feeling well through the holidays- not sure that I was able to keep up with the kids, but did ok :). My energy has been pretty good, my stomach continues to hang in there and no emergency trips to Omaha this year! How much difference a year can make!
I never feel like I'm really ready for Christmas and am always sad when it's over. I spend advent trying to get mentally prepared, pondering the meaning of the season, striving to get excited for Christmas and yet I never feel like I'm as “excited and happy” as I should be. Then it's over and I feel like I've missed something. It's like I can't wrap my brain around what we're celebrating because if I could, I'd be ecstatic. Even after all that's happened the past 2 years, I still struggle to really appreciate the birthday of the savior of the world. Why is that? Maybe it's the busyness of our days or the crowds at the mall – the devil has done a great job of distracting us from what December 25th stands for. I've probably heard this verse from Luke 100 times, but for some reason I never “heard” the symbolism until this year or thought that it in any way related to me - “but there was no room for them in the inn” - Would there be room in the inn today? I know that God still has a purpose for me, and when he knocks, I pray that I do not turn him away because “there's no room" for him. So, even though another Christmas has come and gone, I will continue to seek so that I can “see the star and rejoice”.

Pretty much the same...

Kind-of a dreary day all the way around. Most of the trip to Omaha was either overcast or raining, (but thankfully it wasn't freezing). Once we got there things went rather smoothly. As I suspected, not much has changed since November. Blood work is stable and chest Xray looks the same. The amount of air that I can move out of my lungs changed very little – from 49% to 51%. :( That translates to feeling fine doing day to day things but getting winded with any exertion. Dr Vose reminded me that we should be happy that the condition of my lungs hasn't deteriorated and has shown positive, albeit small, improvement. However, all I can think about is that the reality is that they might never get better and I'm still not ready to come to terms with that. At this point there's not much we can do but wait and pray. I will strive to keep positive and not allow myself to dwell on what I can't do but remind myself of all that I can and have faith in God's healing. And the way it looks now, I should actually be able to enjoy Christmas, New Year and my birthday at home this year!

“I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from her to there' and it will move. Nothing will be impossible for you.” ~Matthew 17:20-21

Day by Day

It's been a good couple weeks! I've had good energy, my stomach seems to be behaving for the most part, I'm able to work and finding time to play! This weekend I was able to get in some country dancing for the first time in a long time – it was great fun and thankfully my feet remembered what to do. Unfortunately, it was a painful reminder that my lungs still have a long way to go as I had to rest after each song. I guess we'll find out exactly where they are on Wednesday when I go back to Omaha for my monthly check. We're praying for greater than 48% functionality!

Oh, How Thankful!!

Happy Thanksgiving! I hope that everyone had a nice weekend with plenty of time to relax and reflect on how blessed we all are – for our health, the food on our tables, the roof over our head, the freedom to live in this country... Every day I wake up and thank God for another day and pray that I serve him well, but on holidays, it seems all the more “eye-opening”. It doesn't seem possible that it's been almost 2 years since I started this wild journey and I am so thankful to be sitting here blogging about it. It's not uncommon to hear people say, “you never know when you're time will come” but I don't think they really believe that they're going to get hit by a car or pass away any time soon- the statement doesn't change the way they live. But for me, that's been a legitimate reality – I don't know if this will be my last Thanksgiving or Christmas. So this weekend, I am especially thankful for my health, my colon :), for my returning strength. Thankful not just for the food on my table, but the ability to eat it. Thankful not only for a warm bed to sleep in, but the ability to sleep, not just for a job, but for my ability to go to work and enjoy it. Thankful for the opportunities to help others. Thankful for all the friends and family that continue to surround and support me. And top on my list, I am thankful for our Lord – the one who is true to his promises, never leaves my side, gives me a peace beyond all understanding, gives me strength and courage when I have none and who is faithful, even when I am not.
“Praise the Lord, O my soul, and forget not all his benefits – who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion.” ~ Psalm 103:2-3

All I need

This morning while I was getting ready to head to Omaha, I read this in my devotional, “And today God is saying to you, 'I will be all you need!' Now you know that God is able, but don't you sometimes wonder if He's willing? Simply having a revelation of God's ability is not enough; you must also believe that He will, in order to put a solid foundation under your faith...God may not answer your prayer in the way you think he should or when you think he should, but if you trust Him He will answer in the way that's best for you.” It was a great reminder for me that despite all the craziness, and regardless of what Dr. Vose had to say, God is in control and that's where peace can be found.
Overall, news from Omaha was good. Labs are stable, no free air was visible on the chest X-ray, (they didn't look specifically at the abdomen), recheck of my lung functions showed slight improvement (from 40% to 48%) - doesn't sound like much, but it's better than getting worse and just means I'll be short of breath for a while longer. Dr. Vose stopped a couple meds (yea!) and said she'd see me in a month to do it all again. They all seemed relieved to see a healthy-appearing patient. Do I like the fact that I'm on a restricted diet, can't breathe and get winded going up a flight of stairs? No, I hate it. I'd much rather be at the gym, competing in sports leagues and regaining all the strength that has disappeared over the past 2 years. But, I'm not going to dwell on that – Last week we prayed for a miracle, that I wouldn't need surgery, and I believe we received that. I might think I know what's best, but God knows what's best and I need to give Him time to work. He's all I need and the one thing I always go to sleep knowing is that he will never leave my side.

“God shall supply all you need” ~Php 4:19

A good weekend

It's been a good weekend. Long before all the craziness of last week, I had planned to visit Lisa, Steve, Keith and the kids in North Carolina this weekend. Since I was out of the hospital and feeling ok, I decided to go ahead and take the trip and am glad that I did. It's been a nice break and great to see everyone. After a full weekend of the zoo, church, lots of games, I'm ready to sit down and watch a Chiefs victory (I hope)! I started eating some soft foods on Friday and that seems to be going ok which is a huge relief. Once in a while I still get tired and still have the cough with an occasional stomach ache but nothing emergent. Will head home tonight and then off to Omaha on Tuesday. Originally the plan was to repeat my lung function tests on Tuesday, but not sure if that will change with all the happenings of the past week. Will update when I know more.

Hold the phone...

First and foremost, thank you so much for all your prayers for healing without surgery, for patience on my part, and wisdom on the part of the doctors. I know that this latest ride is far from over, but it looks so much better today. The surgeons and doctors surprised me this morning with an offer to not only start a full liquid diet, but to go home this evening! They felt comfortable that if things were going to turn south, they would have done it over the past 4 days. I guess I should feel flattered that they trust my ability to watch for (and report) worsening of symptoms. You can't imagine how relieved I am to be able to go home and return to taking care of myself! (not to mention sleeping in my own bed, not being connected to an IV pole, and not being awakened with a labdraw at 4am!) So for now, here's the plan: I am free to go home, continue lots of meds and return to normal activities. Diet will be liquids for another day or 2 and then “progress” back to the diet that I followed last winter when I was resting my gut (white and bland- very limited fruits and veggies, no fiber, no meat, no taste :) All that being said, I'm actually very grateful for that diet because if not that, it was going to be an elemental diet which is basically already broken down liquids that taste terrible and are very expensive. Next week I'll follow up in Omaha and we'll revise the plan as needed. It's been a very long and at times stressful 5 days and I have NO idea the purpose of all this, but I've come to terms with not knowing and am ready to move forward, grateful for each and every day.

Father, I thank you that you have heard me. I know that you hear me always. ~John 11:42

A tentative plan!

I'll try to keep this brief yet cover all the basics as it's getting late and I'm a bit tired. Feeling a little better tonight now that I have at least a little bit in my stomach! The surgeon said that the amount of air is virtually unchanged from Friday so I had 3 options – 1. start clear fluids and then SLOWLY progress my diet to see what happens, 2. go to surgery and take out 2/3 of my colon, 3. go to surgery for a laproscopic “look around” and if things look bad or questionable, start removing my colon. To no surprise, I selected option 1! I was glad to hear that he also felt that to be the most prudent option. A little later in the afternoon, a GI doctor came for a visit and he had a little more information to share. Said that it's not very common but some people have “asymptomatic” air in their abdomen and that with time and conservative treatment it should resolve over 1-2months. That was a relief to hear! Unfortunately, the treatment is to address the cause of the air and they don't know the cause of the air so I'll be on antibiotics and a pretty boring diet for probably a couple weeks, lots of close watching and all with the understanding that if anything changes I'll be heading for the operating room. So, for now I'm on a clear diet. I might get to have full liquid diet sometime tomorrow and if I tolerate that, might get discharged on Wednesday. Lots of “mights”, but it's good to have a plan – the indefinite “watch and wait” was getting to be more than I could handle. Still have a long way to go so will continue to pray for an uncomplicated resolution. But, very nice to know that it is a possibility!
Thanks for all the prayers, thoughts and well wishes!

Still waiting...

Xray this morning still showed air but I don't know if it's the same, more or less than Friday so here I sit, still hungry, still waiting. The surgeons and doctors promised that they'd be in before 5 today...

The saga continues...

More drama, more excitement, more faith required to trust in the existence of a greater plan. Yesterday started out like any other day – went to work, felt a little better than earlier in the week, was excited for Friday night (margaritas, apps and games with friends)... As the morning went on, even though the cough was slowly improving, I had decided that if time allowed, I would go ahead and get a chest X-ray just to get it done. So before lunch I went and had a chest X-ray to rule out pneumonia – by the time I made it back to the office, the radiologist had already called and was very concerned. No pneumonia, but they could see some air below the diaphragm (unless you've had recent abdominal surgery, you shouldn't have free air in the abdominal cavity). Are you kidding? I felt fine – no fever, slight stomach ache which I had accounted as muscular due to the coughing... but, Dr Vose was very concerned by the report and said I needed to go to the ER – do not pass go. Trying to be compliant, I went. Once at the ER, they repeated the Xray and found the same thing so I went for a CT. The CT showed significant air in the wall of my colon as well as free air surrounding the colon. To a surgeon, this is a surgical emergency. The problem is, that I was sitting up talking, looking fine, vitals stable... and that CT belongs to a very sick patient. To no surprise, I (not being a surgeon) wanted to go home, figuring that the air had been there for who knows how long and was in the process of getting better. To make a long story short, that was not in the cards and after talking to the surgeon I realized why – since I'm on steroids for the reaction going on in my lungs, it's possible that my body is not able to mount a normal response to infection/inflammation... and on the inside, I could look much worse than I do on the outside. Nebraska felt it was in my best interest to go to surgery last night and have my colon removed, thankfully the surgeon here had the benefit of seeing “me” in addition to the scan and felt that a watch and wait approach was reasonable - With the understanding that if anything changed in the slightest, I would be in the OR. Sooo, after much discussion (going to Omaha by ambulance, Omaha by private car, staying here) it was decided at midnight that I had to stay here, be watched like a hawk, start more antibiotics, if no change by Monday, re-evaluate trying to set up an ambulance ride to Omaha.
So now I sit, hungry and waiting. Praying that God's plan is to have this miraculously resolve and this will be to His glory.

“Hear my prayer, O Lord; listen to my cry for mercy. In the day of my trouble I will call to you, for you will answer me.” ~Psalm 86:6-7

Still by my side

An update is well past due, but I still don't know what to blog. Since I last wrote, I honestly can't say that I've seen any obviously positive changes. In fact, I'm sure that I feel worse than I did 2 weeks ago. I'm coughing, I ache, my stomach is doing who knows what and sleep is less than restful. Would make sense to think this is a result of all the medications – another situation of having to feel worse before you feel better. Or, maybe the meds are working, my lungs are starting to heal and thus the cough etc is a sign of “return to function”. Or maybe I've picked up some sort of infection. Or maybe it's a combination of all of the above. I don't know and it's too exhausting to try and figure it out. I just keep telling myself that tomorrow is a new day and God is in control. I don't need to understand, my call is to trust and persevere. Christ will remain my “refuge and strength” as I face each day. (grateful for each and every one!) And who knows, maybe tomorrow will be the day when it all turns around – for He is faithful, and I'll be sure to let you know.

"In my distress I cry to the Lord, that he may answer me. For we are powerless against this great multitude that is coming against us. We do not know what to do, but our eyes are upon thee.” ~Psalm 119:1

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.

End of the tunnel

I think God has once again been merciful to me. I've heard from many people about how painful and awful shingles can be, but for me, it was more of a nuisance. Literally a “pain in the arse” :) There were about 3 nights when it was difficult to sleep and I had to be careful how I sat, but overall, they were tolerable. Once again, Village Peds proved to be a blessing as being at work seemed to help keep my mind off of it. It didn't spread down my leg and everything seems to be drying up now. I pray that it keeps progressing in that direction! I know that when kids get it, it's not as painful as it is in adults. So I guess that means even though I don't feel like it, I'm closer to pediatric than geriatric! Tuesday I head back to Omaha, hopefully everything will check out ok. I've been having a little bit of shortness of breath and fatigue, so probably won't make it out of Nebraska without a CT. Better safe than sorry. Other than that, the days continue to pass by – ups and downs, but the overall trend is definitely up. I hope everyone enjoys what's left of summer!

Maybe more red than green.

Seriously, you've got to be kidding. I just can't seem to be content with “boring” when it comes to my health. What started out as what I thought was a “sore bum” from PT has turned out to be shingles! Shingles, a nice red, blistery rash that started on my tail bone and has continued to progress south. So far it's only spread to my upper leg and I pray that it doesn't go any farther but the nerve track that's affected goes all the way down my leg so it could potentially affect the whole thing. It's only mildly uncomfortable, alternating between a slight burn/ache and a mild itch and again I pray that it stays that way because all I keep hearing is how painful shingles can become. Dr. Vose said that I needed to “immediately” start an anti-viral but I'm skeptical that it will help at this point since the symptoms started several days ago, but we'll give it a go and take 1 day at a time until we've cleared this hurdle. For now, I guess I'll be a good “teaching case” for everyone in my office.

“Trust in the Lord with all thine heart and lean not unto thine own understanding..” ~Proverbs 3:5

It's greener on my side!

Life is good around here. It's been busy at work as everyone is needing a physical before school starts. A few long days with short lunches, but it's been nice seeing old faces and catching up with patients that I haven't seen in a while. Last night some big storms rolled through KC and to no surprise I managed to sleep through them. When I was leaving for work I mumbled as I noticed some downed limbs in the yard (nothing large enough to need a saw) but a nuisance none the less. I didn't get more than a mile from my house when I started to feel bad about my mumblings – other neighborhoods looked like an ice storm had hit – trees down, fences gone, electricity out, roads blocked. One street was blocked not just with high line wires, but with all the high wire poles- laying like dominoes! Instead of being annoyed that my trees had once again littered my yard, I should have been thanking God that I still had trees. I guess that's probably pretty common. We get caught up in our own day-to-day, dwell on how “rough” we have it, and stop noticing what's going on around us. I've been praying lately that God would open my eyes to those in need, show me ways that I can share the love and mercy He's given me. I know that He provides all of us with opportunities to share and help if only we take the time to see.
10 more days before I head back to Omaha.
“Be very careful then how you live – not as unwise, but as wise, making the most of every opportunity... Therefore do not be foolish, but understand what the Lord's will is.” ~Ephesians 5:15-17.

Day 420...

Lab results came back and thankfully they were boring! Platelets eeked by just above 100, Hemoglobin was a little bit higher, CMV and HPylori were both negative! I had my 1 month evaluation at PT and they seemed very pleased with my progress. They seemed equally impressed at how I manage to successfully accomplish tasks even though I'm not using the "correct" muscles (probably the reason for the large knots that I have in my shoulders - they've been there for longer than I can remember). In any case, the knots scored me a 15 minute massage in an attempt to get them to relax so that the correct muscles could try to work. I've never been so thankful for the knots :) A few of us went country dancing for the first time since I got sick and I was still able to make it around the floor (but have to admit that we didn't try anything too fancy). I still haven't tried to "run" - I think I'm a little afraid at what will happen, or rather, what won't happen! Maybe next week.
Otherwise, pretty status quo - lots of kids needing physicals has managed to keep us busy at work. Hard to believe that summer is almost over and a year ago I still had 6 weeks in Omaha! Oh, the fun I missed ;) Three more weeks before I go back to Omaha.
"Behold, I am with you and will keep you wherever you go...for I will not leave you until I have done what I have promised you." ~Genesis 28:15

Moving Forward

I think I'm falling behind in the blog department! On a day to day basis, things seem to be rather “day to day”, but when I look back, I realize how God's hand continues to be at work all around. I'm still feeling good the majority of days and the weight and strength continue to increase. I'm still going to PT and seeing results. This week they'll re-test me to objectify my progress over the past month.
Some not so little accomplishments and experiences over the past 10 days – I walked a mile on the treadmill (and didn't feel like I was going to fall down); I was able to walk down the aisle at one of my best friend's weddings and enjoy a beautiful day with them; and God saved me and my house when a very large branch mysteriously fell from my 60 yr old oak and landed perfectly between my house and the neighbor's. (and there's not much space between our houses!) It was ridiculous – there was so much tree on the ground that I literally couldn't walk between our houses, but both roofs were virtually untouched. I love “Wow God” stories.
This week is “lab” week so I'll try to send out an update when I get back the results. Hopefully they'll be very boring! I still have another month before I have to head back to Omaha – however I don't think the flood waters will be down by then so might be a long “scenic” trip (and you all know how much I love those!)
Hope you're all surviving the heat - personally, I LOVE not being cold!

Thankfulness

I can't count the number of times this weekend that I would see or do something and think how far I've come and how thankful I am. Thankful that I can walk up stairs, thankful that I can stand up without holding on to something, thankful that I can put my pants on while standing up, thankful that I can eat at restaurants, thankful that I can eat!, thankful that I can hang out with friends, thankful that I can help others, thankful that I can lift the groceries out of my car, thankful that I can genuflect before the alter, thankful that I'm not trying to sleep in the bathtub (which is what I was doing a year ago as my hands and feet were on fire), thankful that I'm spending my summer in KC, cancer-free! At some point in the not too distant past, I couldn't do these things and I think this flood of memories was good, not only to remind me to be thankful, but to help me be patient with my limitations. I can do so much, I need to not dwell on the little things for which I still strive to be able to do or the minor aches and pains that occasionally cross my path. All will come with time and I'm pretty sure that impatience and whining won't get them here any quicker.

“Thank God because his compassions do no fail.” Lamentations 3:21-23

Happy 4th!

Happy 4th of July! So much for which to be thankful – for all the people who have sacrificed so that I can live in the this country. Occasionally I think back to where I was a year ago. Most of the memories are a blur, but typically I can remember landmark days like today. For some reason, I can't remember 7-4-10 at all so I looked back at my blog to refresh my memory. One year ago I was still in the hospital, running fevers and having to receive nutrition through my IV because I couldn't eat and my entire GI system was sloughing. Mom was having to blog for me at that point. I had a hard time reading it, I don't know how Mom and Dad lived it. After refreshing my memory I am even more grateful for my freedom – from the hospital, from the chemo side effects, from the cancer! How great it feels to be back to helping others, to be sleeping in my own bed, to be able to eat food off the grill!!! I'm back to being able to “help myself” in most things, but have not forgotten that God is my ultimate strength and it's ok to ask for help.
“The Lord is my strength and my song;...he is my God, and I will praise him, my father's God and I will exalt him.” ~ Exodus 15:2

Using the foundation!

Every day this week I've thought that I need to update the blog, but I can never think of anything to say. I didn't draw labs this week, so I presume that those are still status quo, the cankles are back which is annoying and I'm a bit tired, but nothing to complain about, and the past 2 days, the nausea has been a LOT better – so thankful for that! Tonight I think I'll have some taco soup – hope it likes me as much as I like it! I finally decided to get some tips on the rebuilding of my strength. It dawned on me that I don't really know how to get into shape when starting from ground zero – blessed I guess that I've always been able to physically do what I wanted – might have ended up with some sore muscles and probably looked ugly along the way, but I could do whatever I set my mind to. Now, I feel like I'm missing the foundation. It was an interesting hour with the therapist. Realized that I am out of touch with the little things, can't mentally control the support muscles, not even using the right muscles to breathe! She was testing some of my core stabilizers, and what should engage as soon as I move an arm or a leg, didn't start to contract until I was almost at full extension. She would say, “can you feel that muscle contract” as she poked into my side and I would give a tentative “yes” even though I don't think I ever felt what I was supposed to. I think that's how I often am in my faith. God is there, in the background, ready to support my every move, but I don't seek Him out until I am almost fully extended. I can't hear His voice because I rarely devote the time to really listen. I should go to him with each step instead of relying on myself and waiting until the last minute to recruit His help. Everything works better when we rely on the stable foundation. And once we acknowledge it, realize it's power and the role it can play, it's much easier to feel it working.
So, for now I'll be at home, practicing how to breathe and hopefully figuring out to get some muscles, that I can't really feel, to work again. Wish me luck.
"Now may the Lord's strength be displayed..." Numbers 14:17

Day 365

Day 365! One year since my transplant. I wish that I felt better for this landmark day, but it's amazing none-the-less. I just got word from Nebraska that my bone marrow came back clean so it's official - I'm still in remission! It's very hard for me to even say the word. On Sunday, a gentleman at church (who I've never really talked to and I'm sure doesn't read my blog) asked me if I was cured. I sit behind him EVERY week and out of the blue he felt inclined to pull me aside this week, a week when I had an answer. As I talked to him, he just smiled and said “I knew you would be”. I don't understand how God works and I still can't imagine why He decided to work a miracle in me but I'm glad that He did. A year ago I made some sort of comment in my blog about waiting to see what God had planned and I feel like I'm still doing that. At the beginning of this journey someone told me it would take 2 years to feel back to myself and I didn't want to believe that, but I’m starting to think that may be true. :( If that's what it takes, than that's what we'll do. I just keep telling myself that it's a good day and sure enough it is!

Yippppeeeee!

Well I guess God isn't going to let me off the hook yet and still has some plans for me! I just finished a long day of tests and Dr Vose gave me the long awaited news that I still appear to be in remission. They don't have the results from the bone marrow biopsy yet, but the PET scan didn't light up like a Christmas tree which means that the cancer is not in my lymph nodes or spreading everywhere. I also got word about the EGD from last week and they couldn't find any signs of rejection! They did pick up evidence of a bacteria which has probably been making me feel sick and can cause ulcers so they started more medicine for a couple weeks. It's yucky stuff but at least it will treat the problem and I should start feeling better! More good news is that I'll be able to stop most of my other medicines, and can restart almost all my vaccines tomorrow! I only have to draw labs once a month (probably to make up for the 6 times they poked me today) and go to Omaha every 3 months! I guess the only “bad” news that I got today is that my bones have taken a big hit so I need to start treatment for osteoporosis. I also have a little degeneration in my hip but unless it starts to hurt again, we don't have to worry about it for now.
Thank you for all your prayers and to everyone that has reminded me of the verse that I've stood behind and leaned upon for the past 17 months – that God has given me a hope and promised a beautiful future. It brings me to tears when I try to think about it all – how far I've come, and how faithful and merciful God has been. I am so glad to change the emphasis of my prayers from pleading to praising. I'm very excited to see how God is going to continue using this and what plans He has for me.

And we know that in all things God works fr the god of those who love him, who have been called according to His purpose.” ~ Romans 8:28

Nothing is too hard for the God of the universe!

Well tomorrow is the big day. Mom, Dad and I will drive to Omaha tonight so that we’ll be ready for the early start to a long day. I don’t know if I’ll know the results by the end of the day and I’m still waiting on results from last week’s EGD. So “patience” is the word of the week. Overall I’ve been feeling pretty good – last weekend I had lots of excuses to enjoy the nice weather and hang out with friends. One of them pointed out that since there are more “good” days than “bad” days, I could say that every week is a good week. I like that.
Still praying for strength and good results tomorrow. Praying that God will continue the good works that He has begun! Praying that I am able to accept and handle whatever the future holds and that God continues to grace me with the peace that transcends all understanding! (right, Em?)

“Oh Sovereign Lord, you have made the heavens and the earth by your great power and out stretched arm. Nothing is too hard for you.” Jeremiah 32:17

Faith or Worry

A quick update, I guess 4 weeks is the threshold for symptoms to persist before we are forced to take action. Since the loss of appetite and nausea refuse to go away, Tuesday morning I’m going to St Joe hospital for another EGD to rule out GVHD. The procedure itself should be pretty routine and quick, but it will probably be a week before we get results. I read somewhere that worry and faith can not co-exist so I’m trying very hard to not let my mind fall into the “what if” spiral. That only leads to worry and doubt and loss of sleep – none of which helps the situation. I have a lot of big tests over the next 9 days and to be honest, it's quite nerve racking. The results will have such a huge impact on my life. I plead and pray for good news – that I'm still in remission, that I'm not falling back into rejection, that all the treatments haven't left me with osteoporosis or other organ damage. The closer I get to the anniversary of my transplant, the more I realize how much easier it is to just not know. God has blessed me with peace through so many trials, I know that He won't leave me alone now. And am confident that my family, friends, and supporters around the country will continue to stand by my side whatever the future holds.

“Blessed are those who trust in the Lord and have made the Lord their hope and confidence. They are like trees planted along a riverbank with roots that reach deep in the water.” Jer. 17: 7-8

True Image

Status hasn’t changed much in the past week – which could be viewed as a very good thing or a frustrating thing. I’m going to take the positive outlook in that I’m not writing this from a hospital room in Omaha! I still have days when I don’t feel very good but that only happens a couple times a week and on the others I just don’t have much of an appetite. My labs looked good yesterday but I was really hoping to break triple digits on my platelet count – 98 last week, 98 again this week. (150-400 is normal) Guess the office will have to wait another week for celebratory brownies! ;) Anyway, since I don’t have anything exciting to report, I’ll share a little tid bit of information that I recently heard. “Veronica” means “true image” and if you’ll recall, Veronica is who wiped Jesus’ face while he was carrying the cross and an image of Christ’s face was left on the cloth. I have not done the research to see if “Veronica” meant “true image” before Christ or only after the crucifixion. But in any case, a good reminder that we need to allow Christ to make a lasting impression on our lives. “Bad stuff” definitely leaves its impression, but hopefully God’s impression is deeper!

In a holding pattern

Thank you for all your prayers. I talked with Dr. Vose and she wants to "watch it" for a week and see what happens. Yesterday was better than Sunday and I feel pretty good this morning. I wish I could feel confident that all was on the up & up, but it seems like this has been the pattern the last couple weeks - 2-3 ok days, then a bad day. It's hard to be confident in anything when it can change so fast. For now I'll continue to pray for the strength to trust and for God to do the healing.

Prayer request

I'm not really sure what I'm asking for, but am sure that prayers would help. I can't really pinpoint anything specific but I just don't feel good. I'm really afraid that I'm heading back down the path of GVHD. Unfortunately, there's no easy way to test for that. I hate this feeling of uncertainty and "fear". I know that I need to continue trusting in God's ability to take care of me, but I'm having a hard time even formulating prayers. Please pray that God will remove my fears, that my symptoms will disappear, that Dr. Vose will have wisdom, and that I will have the strength to deal with whatever comes of this. Thank you.

Woo-Hoo, I can mow again!

I'm headed home from Omaha after another successfully uneventful visit with Dr. Vose. My labs are stable, platelets still low. She's continuing to decrease my meds – I'm stopping the last of the steroids and if the CMV is negative again this week I'll get to stop the anti-viral which should allow my platelet count to start increasing. (But I do have to restart the potassium – ughh). So, nothing too exciting EXCEPT that she gave me the go-ahead to working in the yard again! I know most of you are wondering why I'm excited about that, but there's something therapeutic about yardwork and it's another step toward feeling normal again! I guess I'm presuming that my legs are going to hold out and allow me to successfully complete the job – it won't be nearly as rewarding if I can't actually do it. I'm not really worried about that – might take me twice as long as it did 2 years ago, but I'll finish it – you can put your money on that. Just like you can still count on us winning this battle and continuing to see God glorified every step of the way. Next big landmark is quickly approaching with the 1 year anniversary of my transplant. Let the countdown begin to June 14th! (I figure I'll get to mow the yard at least 4 times between now and then :))

Day 325 - tired of waiting

Well it’s day 325, next week I head back to Omaha for my monthly check-in with Dr. Vose. I’m feeling pretty good. Last week I had a few days where I didn’t feel the best and rejection thoughts crossed my mind, but I think I just over-did it a bit and am feeling better this week. Praise God – I don’t know that I could mentally or physically handle another round with GVHD right now. Labs looked stable this week (platelets are still frustratingly low) and the pesky CMV virus is not detectable again – 2 weeks in a row! I’m really hoping that next week Dr Vose will give me the “OK” to do yard work since my white count has been stable. Probably sounds crazy to most of you, but I really miss mowing the yard, cleaning out the flower beds and planting the annuals. Something therapeutic about it, especially in the spring. I guess I’ve survived for 15 months and can wait a little longer if needed. (But I don’t like it). If I’m honest, there are several things that I’m really “missing” that come with the sunshine and nice weather. Over the coming weeks or months, I’m afraid those things might be harder to deal with than not being able to mow.

“And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.” ~ Hebrews 12: 1-3

A look back...

I have to be honest, I don't really remember a lot of specifics about the past year (probably due to God's mercy), but my family reminded me of the blog entry I wrote a year ago so thought I'd post it again...

Back on track today as they've restarted the chemo. One day closer to being 75% done!! Today was a pretty good day. I've been fighting a headache which they say is from the LP- not sure how long that will last. It dawned on me this morning that this is the start of holy week and as much as I dislike the current journey that I'm on, it brings me closer to understanding the meaning of Easter. Without a cross, it is very difficult to follow Christ or understand what he did for us. Obviously all of us have our cross, mine happens to be big and hard to miss. Carrying it has allowed me to participate in Jesus' sacrifice, to relate a little better to Christ. Even though I won't be able to attend any Holy week services, I feel closer to Jesus this Easter than any other. I pray that as I bear my cross, I won't become bitter but rather that I'll have a greater appreciation of what our Lord did for us. That I'll be more motivated to follow and to serve. And after we've won this battle (and had a great party) I pray that God shows me how I can use this experience to serve Him better.

If any man would come after me, let him deny himself, take up his cross and follow me. ~Matthew 16:24
Posted by Janna March 28, 2010

Happy Easter!

Hard to believe that it's Friday already, and that Easter is here! Not much has changed from the “health front” - maybe a little more hair and a little more weight ;) I'm still feeling good and sleeping good. Labs are stable – would like to have a few more platelets and a lot more strength, but so it goes. Last week when I was in Omaha, they didn't see any evidence of that pesky virus that won't seem to go away, (yea!) but this week the labs detected it again – very confusing, such the roller coaster ride. But what's new? I've come to expect the unexpected. Good way to help me remember who's really in charge I guess.
This week, I hope that you've all had time to truly think about “Easter”. I have to admit that I've had a hard time preparing for Easter. I can't seem to quiet my mind long enough to ponder how much Jesus endured in order to guarantee us a way into heaven – the betrayal, the denial, the abandonment, the physical pain... It's hard to think about all the suffering that occurred during the days preceding Easter, but if you choose to skip over that and go straight to Easter morning, it's just bunnies and baskets. To fully experience the true joy that Easter offers, you have to acknowledge the great sacrifice and love that led up to it. If you've never seen the Passion of the Christ, I highly recommend it – it's hard to watch, but it will give you a new appreciation for Easter and Christ's love for us. May you have a wonderful Easter – one full of overwhelming, unending joy.

“For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.” - John 3:16

“Not typical” - really? No!! :)

Mom, Dad and I made our monthly trek to Omaha today. As if we didn't already know, my body's response to this journey is once again “not typical” according to Dr Vose. This time it's in regards to why my hair hasn't grown back in the 300 days since my transplant (that's right, we've passed yet another landmark – 300 days!!!) Everything else looks good and Dr Vose is happy with my progress. She hopes to have me off all the immunosuppressants within a couple months and then take me off all the other meds – yea! That means removal of restrictions surrounding things like eating salad and working in the yard! We just need to keep the stem cells “playing nice” in the clubhouse yet not falling asleep on the cancer watch. Those would be the top 2 things on my prayer request list, with return of strength being #3. (I'm afraid I'm still a long way from returning to the athletic field :( And as for the hair regrowth – not sure that that makes the Top 10. I'll just be content with the pixie cut and having to put sunscreen on to protect my scalp! God has promised me a lot of things and has always provided more than I needed and all in the perfect timing. Can't recall any promises about “hair” during my quiet times but guess that too is in His plan – after all, he knows how many hairs are on my head, so he's well aware that I'm still on the sparse end of the spectrum. Must be a lesson here somewhere :)

“Indeed the very hairs of your head are all numbered...” Luke 12:7

“Your beauty should not come from outward adornment, such as long braided hair... Instead, it should be that of your inner self, the unfading beauty of a gentle and quiet spirit, which is of great worth in God's sight. I Peter 3: 3-4.

He is ABLE

Wow- what happened to last week? Maybe it’s the thought of spring finally being around the corner that made last week go so fast – I can tell you that I definitely spent all week looking forward to the beautiful weather of the weekend! So I guess that’s my excuse for not sending an update – oops. Things continue to steadily improve leaving little room for complaint. My labs are stable (if not improving) and I have good energy, continue to sleep well (praise God!) and am slowly but surely able to “do” more and more. Not quite to sand volleyball or Ultimate shape, and my hair is growing too slow, but all that will come. Next week I head back to Omaha.
This weekend I went to a Women’s Conference and it was a great reminder of many things, but one of the big ones for me was that whatever we’re facing, our problems are not bigger than the power of God. God is able to do infinitely more than we could ever ask or our brains could imagine. So we need to let God out of the box that we’ve created and pray like we really believe that God is “able”! Give him the opportunity to amaze.

You have to ask

Wow, it’s already Thursday and I haven’t sent my weekly update! Probably a sign that I’m still looking for the “yellows”:) Things are still going pretty well around here – still feeling like the turtle, but maybe not quite so skinny. Labs looked almost exactly the same as last week except that the pesky CMV virus is back again – very short-lived absence. I don’t really understand why it keeps coming and going, but Dr. Vose thinks it has to do with my meds and being immunosuppressed. Rock and a hard place I guess. Just have to trust that God is orchestrating and the docs and I are listening! This week the topic of listening and faith have come up multiple times it seems. God’s word has clear promises for us, but despite prayers and waiting, they don’t always seem to be fulfilled in the time frame we had in mind. Are we doing something wrong? I don’t think so. I really don’t know why some promises and prayers are fulfilled quicker than others, and I don't think we ever will. What I do believe is that God is not going to force us to receive His promises or His blessings. If we don’t sincerely look to him and open our hearts to the Holy Spirit, I don’t think we’re going to truly experience the contentment and promises that are available. I believe that sometimes we’re quick to blame God for not answering when in fact we’ve never really asked or opened our hearts - perhaps out of pride and thinking we can do it on our own, perhaps out of fear. Take it from me, contentment is a very good place to be – don’t be afraid to let the Holy Spirit in and just have faith that the one who created the universe is more than capable of taking care of you. If you can’t find the “faith” – just keep asking and believing.

Red Lights

This morning I was once again reminded of my “slight” dislike for red lights as I hit pretty much every one red on my way to work. Did it really make a big difference in my commute, no. Did I still make it to the same endpoint, yes. Is getting annoyed with the stopping and starting bad for my stress level and just another sign of my never-ending struggle for patience – YES. What’s the point of this rambling? As I thought about how silly my driving habits are, it occurred to me that God also uses “red lights”. Putting things or people or events in our lives to make us stop, refocus, give us rest, whatever it is that we need at that moment. I’ve had more “red lights” than I would have liked over the past couple years (and I know that I’m not alone in struggles and trials). But I feel like God has had a real purpose behind all the red lights and the cross he’s called me to bear. There’s a peace that I can’t explain. My relationship has deepened and I have a greater appreciation for the time that I allow myself to stop and just listen. But even with that insight, I still struggle to do it. Now that I’m feeling better, my labs are stabilizing, daily life is getting back into a routine, I’m running the yellow lights and trying to avoid the reds. I’m falling back into the mindset of “doing”. When looking at my schedule for the week, I’m not looking at a schedule that allows me quiet time to hear God’s voice and recharge, but one where I’m trying to figure out when I can get the laundry done. I know this is human nature, esp for the Type A’s out there, but with some help and limit setting, it can be overcome. It will take a lot of divine intervention and assistance in my case! My goal is to not get wrapped back up in “go-go-go,” but rather to be able to sit back, take a deep breath and enjoy the red lights.

Case in point, I don't have time to look up a verse for today's post - what comes to mind is "be quiet, I am God" - probably as appropriate as any :)

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To the Cloud!

I'm happy to report that once again God has brought rest to the weary and heard my cries! I'm now going on 4 nights of pretty good sleep! Not exactly 8 uninterrupted hours but sooooo much better than it has been.
Hard to believe that it's already been a month since my last trip to Omaha, but today we headed back north to check in. The weather is rainy and cold, but my labs looked good and Dr Vose is happy with my progress. They've stopped my steroids and as long as the CMV levels continue to decrease will start decreasing my anti-virals. The most exciting part of the visit was that I got my first vaccine! When I received the stem cell transplant, I lost all the immunity that we developed as kids – chicken pox, pertussis, meningitis, tetanus, polio, hepatitis, flu... Might not be exciting to most, but for me it's a big deal – and no, I'm not worried about it giving me autism! :)
"I sought the Lord and he answered me; he delivered me from all my fears." ~Psalm 34:4

(Just realized that the message board wasn't working but it should be up and running again)

Like a skinny turtle...

Slow but sure wins the race, isn't that how the saying goes? I really can't complain. I feel good, I'm able to go to work every day, the variety of foods that I can eat continues to expand, I have a good appetite, sleep's still not what it used to be, but improving and I've just rested in God's providence in that arena! My labs are stable if not improving and the virus (CMV) that we've been monitoring decreased by 95% this week!! I'm still pretty weak, but I can't dwell on that – there are far too many other things to be thankful for. That will return at some point and until then I'll work to be content – knowing that it's his will and not mine. God will and does provide, of that I am certain. Sometimes I think we just don't open the door to receive the provisions that in his infinite wisdom He knows we need.

"The Lord is good unto them that wait for him. But they that wait upon the lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary; and they shall walk and not faint." (or fall down, hopefully – added by me:)

He hears me, I need to ask

Well, God never fails to amaze me as I blog each week. I really thought this was going to be “just” the update day describing how almost all of my labs are looking better this week (my white count is normal!, hemoglobin and platelets are going up) swelling in my legs is going down, energy is continuing to slowly improve. We’re still tapering my steroids but had to restart a pretty strong anti-viral drug as my labs have revealed increasing levels of a virus called CMV which has been hanging around since the transplant. It doesn’t make me feel sick, but if it gets out of control, could be bad.
Anyway, I thought that would be the end to this week’s update with an added prayer request for me to be able to sleep – I’m still fighting waking up in the middle of the night and not being able to go back to sleep. I was convinced it would get better if I just gave it more time, but after 6 weeks, it’s starting to catch up with me. For 3 days now, I can really feel it wearing on my spirit. So yesterday, in my ultimate wisdom I came up with a plan, I'd try "A", and if that didn't work, I'd try "B" and when that failed...
So as God loves to do, He patiently waits and finds wonderful ways to make himself known. This morning this is what he had waiting for me in my devotional: “I am he, 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 And it didn’t end there, the specific recommendation was to “confess any tendency to complain of my pains rather than praying about them” and reminded me to be thankful that God promises strength for the weary and that He will renew my energy. Wow, EXACTLY what I needed to hear and read today because I think I’ve talked to everyone except God about my sleep. How awesome is God to meet us where we are and remind us that He’s listening. I think I’ll do a little more praying and listening, ask for your continued prayers, and wait a couple more days before starting that Lunesta ;) And who knows, He may still choose to use modern medicine to accomplish His goals, but I'll let Him decide that.

“he will not grow tired or weary,… He gives strength to the weary…” Isaiah 40

Does He hear me

Sorry for the lack of communication this week. Could be lack of inspiration or the fact that it’s just been a really busy week at the office – which is a great feeling to be busy, productive… again.
My labs are improving, slowly but surely. Still low but not as low! I really feel pretty good but definitely find myself getting a little frustrated with how long it’s taking to keep my feet back under me – literally! The return of strength and weight is so slow and I know that a lot of that is due to the fact that I can’t eat all the good “high calorie” fattening foods and pretty much every calorie I eat gets used to carry out “daily living” so there’s not much left over to rebuild.
We’re all familiar with God Almighty, El Shadday, Creator of Heaven and Earth and most of us can grasp the idea of an all powerful God capable of creating the universe as well as a baby in the womb, but why is it that we have trouble envisioning that same God as one who knows us individually and keeps His promises to care for us in the little things. It’s like we think they’re “too little”. But the truth is that the same God Almighty that created the universe, is faithful and does hear the “little things”. He’s faithful to His promise to care for us, to literally give my legs the strength to bear the weight of the day. Nothing happens without His knowledge. I just need to be patient and wait on His timing – He knows, He cares, nothing gets by Him. My strength will return – I just pray it’s in time for ultimate season ;)

“He who dwells in the shelter of the Most high will rest in the shadow of the Almighty. I will say of the Lord, ‘He is my refuge and my fortress, my God in whom I trust.” ~Psalm 91:1-2

El Roi

Every day is getting better and God continues to watch over my progress and guide this recovery. Thankfully Mom and I had a safe trip to Omaha today and as long as things continue to progress, we do not have to go back for a month! Unfortunately, even though I'm feeling better, my labs have not improved much – overall immune system, platelets and hemoglobin remaining lower than I'd like but not critical.. Dr Vose does not know exactly why this is, but said that after having a severe case of GVHD, it's not too unusual. She has decreased or stopped most of my meds in an attempt to remedy the low counts, but we will just have to be patient, smart and trust in the healing hand of God.
I'm currently reading about the names of God and this week I'm pondering “El Roi” - the God who sees me. The God who know our circumstances, past, present and future. The one who knows everything about me. The God who knows MY name! How much peace to know that even when I am lost and confused,weak and tired, the God who created the world knows what I'm going through and cares. What an awesome God.

What a week, Day 233

It’s been a kind-of weird week around here and I’m not even referring to the ridiculous cold and blizzard that shut down I-70 between St Louis and KC! It’s been good in that I continue to feel better and stronger every day! I still have a long crawl up the hill, but it’s so nice to see the continued improvement. My labs weren’t the best this week. My liver isn’t as angry but my white count stays low and my platelets dropped again :( It’s only been a week since we stopped the medicine that was felt to be the culprit and Dr. Vose put another one “on hold” as of today so we’ll recheck labs on Friday and see where I stand. Presuming we don’t get more snow, I’ll be going back to Omaha next Monday. The hard part of this week is that I learned that a fellow patient who went through a stem cell transplant with me last summer passed away. I only knew her for a short time but her faith, drive and fight made such an impact on us. I know that she is in such a better place now and am so glad that her suffering is done, but just wish I could know a little more of “the greater plan”. It’s become so clear, that without a belief in Christ, suffering would make no sense. Even with faith, I guess you can’t “make sense” of it, but at least I know that there is a plan and I’m just not smart enough to interpret all the pieces. We beg and plead for things that don’t happen even though God says, “ask and you shall receive”, but we remove that from context. When a child begs for something that isn’t good for them, parents have a responsibility to say “no” to protect them. The child can’t understand that, but it’s for their own good and one day they will understand if they don’t get jaded by the refusal.

In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trails. 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. 1 Peter 1:6-7

Another "anniversary"

One year ago I got the call with the HSTL diagnosis, is it really possible?

Fear knocked at the door. Faith answered. There was no one there.

Contentment and peace

Sorry for the delay in the update this week but I just couldn’t think of what to say yesterday. For the first time during this whole ordeal, I had a day of uncertainty. I didn’t like it. The feeling of peace through all of this has been so consistent and such a blessing for me and the inkling of that slipping was disturbing. I really can’t put into words what I was feeling, but I’m glad that it’s gone today. I still have no doubts that God is carrying me through all of this, that He has a plan, that He will give wisdom to Dr Vose and that it will all be for His glory.
Here’s the down and dirty as far as actual “health” stuff. I’m feeling better and stronger each day. It is definitely a slow crawl up the hill, but I can see progress! (This morning I could actually see my ankle bones – didn’t last long but at least I know they’re still there :) My appetite is good and I’m tolerating a few more foods. My electrolytes looked better this week but not perfect, but my white blood cells and platelets fell again this week. That was alarming to Dr. Vose so she stopped my anti-rejection medicine. So, as of today, other than the steroids that they’re continuing to taper, I’m not officially on anything to stop GVHD. This is where I really need your prayers – please pray that I can continue to have peace about this decision, that my blood counts will improve and that the GVHD will not come back! God is good and I know that He is in control of this one.

One year ago today

It's hard to believe that it's been a year since my life started to spin out of control and this crazy journey began. As you'll remember, symptoms started long before, but it was one year ago today that my spleen was removed allowing the doctors to finally make the diagnosis of hepatosplenic t-cell lymphoma. So much has changed since then, it doesn't even seem possible. I miss not being able to do what I want to do, when I want to do it, having the energy to “go” 7 days a week, not having to worry about what I touched and who touched it before me, being able to fully serve the patients I've grown to love. But through it all, the support, love and concern from all of you has been beyond words. There's so much for which to be thankful: my greater appreciation for family and friends, my renewed amazement at the power of prayer, my ability to accept help and share struggles, being able to wake up each morning content and grateful for another day, a renewed appreciation for what's important and what's really not, and a strengthened faith and trust in God's ultimate plan. I still believe that God has a plan for my future and that plan involves me getting back on all the fields I love – full time. Just not sure what will happen between now and then.

For every action…

Yesterday Dad and I headed back to Omaha for my recheck with Dr. Vose. The GVHD continues to improve which is a huge blessing and they’ve said that I can slowly start to increase the variety in my diet as long as it’s tolerated. I’m pretty gun-shy so I’m sure it will take me a while to stray outside the box – even though pizza and Mexican are sounding REALLY good. Overall, the visit went well, but unfortunately you can’t expect to take a bunch of powerful drugs and not expect some side effects, and my labs are reflecting that. My platelets are down, white count is falling, liver is angry and triglycerides are running away with the farm. Dr Vose would love to be able to stop the steroids, the new anti-rejection meds…, but that’s not an option so we’re going to have to deal with the side effects, watch closely and wean as quickly and responsibly as tolerated. Probably the best news of the day is that they feel comfortable monitoring me from KC for a while so as long as things go well, I shouldn’t have to go back to Omaha until February! Praise God! I’ll try to send updates every few days, if you don’t hear, that’s a good thing – means that I’m still getting stronger, bit by bit!
"Fear not, for I am with you, be not dsmayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my victorious right hand." ~Isaiah 41:10

Not my will, but Yours

It's Sunday afternoon and I had a little time (since the Chiefs obviously aren't playing) so thought I'd send an update. Plus, last night I realized that I have failed to provide much detail as to what exactly/medically happened over the past 3 weeks and for those interested, I'll try to give a brief, yet honest overview. As far as how I feel, it's still 1 day at a time, but what's new? I'm not regressing which is good. Last week I made enough progress that I didn't have to travel back to Omaha on Friday. Next appt is Tuesday and I pray that if things still appear stable, they might let me go to every other week visits! I've returned to work which is so good for my mental health. There's really nothing to benefit by sitting at home so I need to be productive (or at least feel that I am). I was able to see friends this weekend, get to church... I'm still very weak, definitely the worst it's ever been. I'm impatient to regain the strength, but decided this morning that if God can use 5 loaves and 2 fish to feed thousands, He can use an atrophied body to accomplish His ends. I just need to be open to His plan and realize that it's His plan, not mine.

Now for the background on what happened for those who might be confused. GVHD is when the transplanted stem cells react against the existing system - recognizing it as foreign and attacking it. The most serious reactions typically happen within the first 100 days and are referred to as "acute GVHD". The rejection can happen very fast thus why we had to stay in Omaha for 100 days last summer. After the 100 day mark GVHD usually takes on what they call a chronic form. It can affect your skin or your eyes or various other organs but is typically more of a nuisance with small setbacks. Right before Christmas, I started to have some intestinal symptoms which is when they decided to start the testing to see what was going on. What they found was acute, stage IV GVHD of my intestinal tract. It hit VERY fast - basically stripping away the entire lining of my gut within a week. The problem with not having a lining to your intestine is that you can't absorb any nutrients. No intestine, no nutrients, no healing... I'm sure you can see the problem. The best the doctors can do is try to "rest" your gut, decrease irritation so that hopefully any tissue trying to regrow won't be washed away, and give you steroids to try and decrease the inflammation/slow the GVHD. But steroids aren't a miracle cure and can slow the actual healing. (not to mention a host of other unpleasant side effects) That's why this has been so precarious and so serious. There's isn't a "cure" - they do the best they can and then watch and wait. Also why they've watched my diet so closely - all the good, high calorie, fattening foods that I'm so hungry for would risk ruining what intestinal regrowth has occurred. I have to baby it along, not giving it anything that might reirritate it. Every couple days I try to reintroduce something, but if it doesn't settle well, I have to step back down. So, I hope that helps for anyone that didn't really understand what happened and will explain why it's taking so long to get back on my feet and why the doctors are so guarded.

Time flies when you're having fun ;)

Wow, this time has slipped away so I'll have to be brief today. Things continue to look upward. A little bump on Wednesday but definite improvement yesterday and today when it comes to the gut. Still in definite need of strength and decreased swelling but we'll just have to wait. For now I am happy with the progress I can see! They're going to continue to wean my steroids and I'll go back to Omaha on Tuesday to see Dr. Vose.
"How excellent [is] thy lovingkindness, O God! therefore the children of men put their trust under the shadow of thy wings." ~ Psalms 36:7

GVHD update

Well I'm back on the road, headed home from my latest trip to Omaha. Praise God the sun has been shining and the highways are clear. The visit was rather uneventful but optimistic that things are moving in the right direction. Some of my electrolytes are still a little off, definitely low on albumin which isn't helping the cankle problem, and the official pathology report showed not only GVHD but also a return of CMV. Despite still needing to regain a lot of strength, I feel that God has been healing the GVHD in my gut and have a peace about the direction in which I'm headed. For now we're going to proceed slowly, tapering steroids every 5-7 days, keeping a limited diet, allowing activities as tolerated and carefully monitoring symptoms. As long as there are no set-backs, I shouldn't have to return to Omaha until next week – Yea!
As always, thanks for your prayers and warm thoughts – more valuable than you know!

Day 3 at home

Wasn't really sure what to expect this weekend as progress was slow to non-existent last week, but I feel like I'm starting to turn a bit of a corner. I seem to be tolerating the slightly increased diet and the calories are definitely appreciated! (To give you an idea of the “diet” I'm currently on, if it's not white, refined, or fluid, I probably can't have it. Nothing with whole grain or fiber, no sugar, no vegetables to speak of, no fat – super exciting). Still waiting to lose the swelling I picked up while in the hospital and impatiently looking for a return of strength. As a good friend reminded me, sometimes God chooses to use doctors and others to help us out and sometimes He just wants to do it His own way in His own time. This is one of those times. I know that my doctors would do anything to speed this process up, but there's really nothing more they can do except watch and wait. Weather permitting, I'll head back to Omaha on Tuesday (hopefully just for the day this time!)

Homeward Bound!

They gave me the ok to head home this weekend which is a huge answered prayer. At this point they feel my condition is stable. It's a lot of watching and waiting so there's really not too much they can do for me up here. (Plus I doubt that insurance is going to pay for me to stay here when I don't even have an IV). I wish I could say that after 10 days in the hospital I was feeling better and rested but the honest truth is that I'm very tired. Yesterday I went to mass and could hardly stand before the presence of the Lord. I'm sure the fatigue is a combination of not eating, steroids, and a gut that doesn't know how to absorb calories. They tell me that it's normal and I'm hopeful that all of these things will start to turn around quickly. They'll be keeping close tabs on my progress as I drive back and forth to Omaha a couple times a week for a while.
Will be a quiet, restful weekend for me but am looking forward to seeing everyone again in the very near future! I have a lot of outstanding “lunch dates” that I intend to keep – even if they have to be delayed yet again.

The Lord is good unto them that wait for him. But they that wait upon the lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary; and they shall walk and not faint.

Day 8

We got a bit of a plan today, if it's possible to “plan” anything when it comes to GVHD. IF all goes well, and that's a big “if”, here's the current scoop. The doctors came up with a more aggressive time line than I had expected. They gave me a limited list of foods that I can try eating, put me on a new drug to try and suppress the immune reaction, switched me to steroids by mouth AND started to wean them today with a plan to continue tapering them every couple days. Said that if I can tolerate all the changes and start to increase my calories they'd think about letting me go home in several days! I'll have to drive back to Omaha a couple times a week to allow them to keep a close eye on my progress, but at this point I don't care. 2 days on the road for 5 days at home is worth it! Once again they reminded me of my need to be patient and the fact that GVHD isn't all bad. Couldn't have GVHD without a successful “graph” so it's a good sign that the transplant worked and Keith's cells are strong and fighting.
January 5, 2011 was obviously not great, but could have been worse. Frozen lactaid milk with a packet of artificial sweetener is surprisingly not too bad and we got a couple hours of “fresh air” this afternoon. (side note – True Grit is a pretty good flick ;)
Thanks for all the uplifting verses and well wishes – none go unnoticed or unappreciated!

But you are a shield around me, O LORD; you bestow glory on me and lift up my head. ~ Psalm 3:3

Admit Day 7

Not much has changed today. Last night I got an unwelcome visit from the doctor about 7:30 – the final stains came back and the pathologist said it was GVHD Stage IV – the news was a bit of a shock since things seem to be improving. This morning after talking to every nurse, PA, NP and doctor about my concerns, they agreed that one lab result would not dictate the final diagnosis but that they needed to look at the entire clinical picture and make a decision. Supposedly the entire team, including Dr Vose, would be consulted later today and they would come up with a plan of sorts. Still waiting to hear how that went. Regardless, no treatment works in every situation so there will be a lot of watchful waiting, careful monitoring of my intake and output, and making changes along the way. Not to mention tons of prayer that the first line treatment of steroids is successful. I pray that they get things under control so that I can return home this weekend! They said that this is fairly late to present with what appears to be acute GVHD – delayed side effects, why am I surprised?
Will write more as I know more. Blood counts and electrolytes still look very good. Thanks for all your love, support and prayers!

Jan 3; Admit Day 6

Finally got the preliminary pathology results and they're thinking GVHD. I guess there's a couple good things to be said for that – 1) since they suspected that on Wed, I've already been on steroids for several days which is the first line treatment, 2) it shows that Keith's cells are alive and well – trying to get rid of things that they view as “foreign” (cancer would fall in that box) and 3) no one is worried that this is in any way related to my cancer leaving remission. I haven't actually talked to the doctors since the preliminary report was released so I don't know where we go from here but am guessing that they will be pretty tight lipped until they know the stage of the GVHD anyway (I-IV). Right now I'm still on a VERY limited diet – sugar-free clears with a miniscule amount of white carbs to be exact. It's awesome, I recommend it to anyone that's looking to drop those post holiday pounds and be miserable along the way.
Had a little mental melt-down last night but today seems to be a better day (and Mom was still here this morning, I don't think she tried to sneak out in the night). Made it to mass this morning and had annointing of the sick so my peace of mind has improved. Thanks for all of your continued prayers – new prayer requests are that the doctors will have wisdom regarding where we go from here, my gut will heal quickly and that I'll be discharged home by mid-week. (I have great plans for 2011 and need to get out of here :)
God bless!!!!!

January 1, 2011

Happy New Year!!! Dry baked potato on NYE and a return to sugar-free clear liquids on NY Day, not exactly what I had in mind, but I guess it's one for the record books. (Didn't feel quite as bad until I heard the guy next door talking about the pizza that he had delivered to his room last night, so unless you also had a plain baked potato, I don't wish to hear about your NYE treats :)
To no surprise, we won't have any pathology results until the beginning of the week so looks like I'll be here for several more days. It's hard to argue with the doctor about having to stay when she walks in a says, this could be GVHD and GVHD can kill you. So I guess I'll sit and wait. I really don't feel too bad. No fevers, stomach aches seem to be a little better. They have me on steroids, gut rest and are starting to change my anti-rejection meds.
The “excitement” so far has been that it's ridiculously cold in Omaha and my room didn't have heat. Wouldn't you know! (or as my grandmother would say, “That's a fine how do you do.”) Since the unit was full, I had a chilly night and then this morning they decided to move me to COOP so I get to stay with Mom in a heated room! Right now I'm sitting in the sunshine and it feels great. I don't really know much else but will try to send an update now and then. Hope you're all doing well and that the Chiefs play well tomorrow – will give me something to smile about.

The Lord is good unto them that wait for him. But they that wait upon the lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary; and they shall walk and not faint.