Day 4 of being at home!!!

It's now been 4 days since getting home (and 4 days since updating - sorry :), and it still doesn't seem real. My weekend was pretty good - I wish I had the energy to do all the things I want to do, but I guess that will come with time if I'm patient. Headache and neck pain seems to be less frequent than before so that's a good thing. I went to work today and it was sooooo nice to be back! It took most of the day just to dig out from under the stack of mail and delete emails. Had my labs redrawn and they looked pretty good. Electrolytes are still a little off, but hopefully Dr Vose will give it the 'ok".

Day 100 !!!!!

Not exactly as I had envisioned Day 100, but the end result was a great one - labs pretty normal, no osteoporosis, no lung damage, nothing anatomically wrong with my neck, and NO CANCER!!!!! They couldn't come up with a reason for my funky electrolytes or why I'm having such bad neck pain and headaches, but it's so nice to know that it's not related to the HSTL or GVH. And they removed my PICC line - I don't know what to do without tubes hanging from my arm :) AND, Dr Vose gave me her blessing to return home!!!
God is soooo good and so faithful. He has been with me every day - good and bad, when I had words to pray and when I didn't, when I was thankful and when I just couldn't look past the obstacles before me. And if the results today wouldn't have been what we've been praying for, He would have carried me through that as well. This journey is far from over as I continue to struggle to regain strength and stay healthy, but I feel like we're moving on to a new chapter. I look forward to seeing what God has in store and how He'll continue to be glorified.
"But you O Lord are a compassionate and gracious God, slow to anger, abounding in love and faithfulness." ~Psalm 86:15

Day 99 - not like I pictured it

Day 99 doesn't look like I imagined it would. My labs didn't improve after receiving the fluids yesterday so they had me go back to the hospital this afternoon for 2 more bags of IVF. I really don't think dehydration is the problem - it would be corrected by now. The plan for tomorrow is to continue with the plan as scheduled and get the PET and CT scans. If there's something ominous or anatomically wrong, it should show up. They didn't mention repeating labs tomorrow, but I'm presuming they'll add them. I should get the results of all my tests tomorrow afternoon when I meet with Dr Vose. (and hopefully more information about a plan for my out-of-range labs) I'll send an update in the evening when I get home.
As a silver lining to Day 99, I didn't have a headache or neckpain for the first time in weeks!
"The Lord himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged." ~Deuteronomy 31:8

Day 98

Well, the first day of testing is over and all went pretty well (bone marrow biopsies still hurt just a bit), but the moral of the story is that if you're sick over the weekend, you'd better drink a ton before getting labs drawn Monday morning. My labs were a little skewed so I had to get IV fluids (which made a long day, longer) and go back tomorrow to recheck labs. In order to do the CT on Wednesday, labs need to have corrected themselves and I need to be healthy. I pray that dehydration is all that's going on.
"I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus." ~Philippians 3:14

Day 97

The only thing more up and down than the way I feel is Omaha weather. 60's on Thurs, 80's Fri, 60's all weekend, 87 tomorrow. Crazy. Glad I haven't packed up my sweats. Last night was another sleepless sick night - out of the blue and without rhyme or reason that I can figure out. Slept through the first half of the Chiefs game (which is a sign of how I felt) but I started feeling a little better in time to watch them lock down the win. Tonight I seem to be rebounding so I pray that a good night's sleep will finish the deal. Tomorrow will be a long day at the hospital for the first round of tests. Will try to send an update with how that goes.

5 more days...

Doesn't seem possible that this is the last weekend that I'll be in Omaha! I'm definitely ready to be home, just hope that I have the energy to do all the things that I've been missing for the past 4 months. Rationally, I know that's not too realistic, but still won't stop me from hoping and trying. :)
I pray that we make a strong push to the finish. Dad has come down with a cold which obviously isn't good and has risen to the top of my prayer list. It has really made me realize how blessed we've been - until now, no one has gotten sick, and I don't think anyone has been sick since I started chemo in Feb. It's no secret that God has kept me safe for a long time (even while working with little germ monsters for a year without a fully functioning immune system) - I'm sure that He will continue to do the same.
"I lift up my eyes to the hills - where does my help come from? My help comes from the Lord, the Maker of heaven and earth." ~Psalm 121: 1-2

Up!!

God heard my cries! Today is a much better day. I got a decent night sleep and the neck and head are pretty good. Still not making any sudden movements as I feel like it could come back at any time, but I'll take it.
More labs and another visit to the clinic tomorrow.

Ups and Downs, ups and downs...

Life continues to be a little erratic around here. My weekend and yesterday were good. I saw Dr Vose and she used the word "excellent" when describing my labs and progress. Everything is still on track to restage next week, get the results and head home! Last night my neck pain and headache showed up with a vengeance (and no, it didn't have anything to do with too much celebrating as the Chiefs defeated SD :) This morning, the pain was still pretty bad, to the point of making me sick, so we had to go back to the hospital. Exam didn't show anything and since I'm not running fevers or having vision changes, they're not worried that it's anything serious. I took some pain meds when I got home and was able to sleep a little bit this afternoon which seemed to take the edge off. I'm praying that it doesn't come back again tonight. A good night's sleep would be much appreciated.
"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

Day 89

It's a beautiful weekend in Omaha - friends coming to visit, sunny skies, cool breeze and I'll be home in less than 2 weeks! The only thing that would make this better is if I was actually at a college football game instead of watching them on TV. :) The week has been pretty good. Still struggling with headaches and neck pain, but my labs look pretty good and I've started to gain back a little weight. UNMC was serious about the whole "100 Day" thing. They've scheduled some tests for Day 98, but the bulk of my restaging tests will be Wed, Sept 22 - Day 100. So much for getting an early release for good behavior. I should get their blessing to go home after all that is completed.

Day 86

Hard to believe that it's Day 86!! (I had to count twice) I hope that everyone had a great Labor Day and enjoyed the last days of summer. My Labor Day weekend was very nice. Since all has been going well up here, Dr Vose let me go home for a couple days! It was pretty low key - caught up with a few family and friends, watched MU pick up the big "W", and just enjoyed being home. I think the next 2 weeks will go quickly and I'll be back home for good! They're currently working on scheduling all the tests for my "100 Day Restaging" so still not sure of exactly when we'll be heading back to KC but should be around the 23rd. So, I have a new prayer request to add to my list for the next 2 weeks - that the restaging will go smoothly and that all the tests will come back "clean"/ aka cancer-free.
It's the home stretch, we're almost there, and everyone in the "club house" still seems to be getting along!!
"Is any one of you sick?...The prayer offered in faith will make the sick person well; the Lord will raise him up...Therefore, confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective." James 5:14-16

What is happiness?

Happiness, we all talk about, all seek it, hopefully we've all felt it, society says we “deserve” to have it. But what is it really and should we spend our lives pursuing it? I feel happy when labs show that my white cells went up, watching a beautiful sunset, hearing that a baby was saved, seeing friends/family, eating ice cream on a summer day, winning at anything competitive ;) and the list goes on. But all of these things are short lived, happiness is fleeting. No one can hold on to it. When our circumstances change, our level of happiness quickly follows. So my conclusion is that a lot of the unhappiness in our world is a result of the endless pursuit of “happiness.”
I think trials, more than anything else, force us to face the fact that there is a big difference between happiness and joy. Doesn't take much to strip us of our happiness. Society tells us to seek happiness, but that mission leaves us feeling frustrated and let down. We might temporarily feel happy, but inevitably it will fade. Joy, on the other hand, is different. It comes from something much deeper than our surroundings and is independent of feelings. The actions of those around us and our surroundings don't affect true joy. True joy, the kind that lasts, is that internal peace of knowing that God is in control. A feeling of contentment that ice cream can't provide. Our level of joy will fluctuate, but it can withstand suffering, pain, trials, illness, failure. None of those things are very compatible with happiness so I think people get angry with God when they happen. They believe God promises a life of happiness or that He “won't give us more than we can bear.” The truth is, the Bible doesn't promise either of those things. It tells us that there will be suffering and it will be hard, but God won't leave our side. As I've said many times, this experience has been much more than I could humanly bear, and I haven't always been happy or strong or felt very courageous. But I also haven't felt hopeless or alone and there's always been a peace. That's faith, that's an internal joy, that's grace and mercy from God.
Bumps in the road are bound to happen, there will be set-backs, I will hear depressing statistics like 19 out of 20 people with this disease don't make it, I will face frustrations, I will have days of unhappiness, but none of this can steal my joy if I continue to seek, trust and follow our Lord.
So, if any of you find yourself on an uncontrollable rollercoaster of life, bouncing in and out of disappointments and frustrations that seem to dominate your life, I'd challenge you to look deeper. Is it “happiness” that you're seeking, or true “joy”? Ask for it.

“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you...” Matthew 7:7-8

“Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.” I Thes. 5:16-18

It's Wednesday...

Well, it's Wednesday and I feel pretty good! Glad the "mid-week slump" has stopped. Overall, it's been a pretty good week. I have a little bit of a headache but much better than it has been and no other real symptoms to mention. My labwork hasn't really gone up, but it hasn't gone down either so I'm taking that as a positive sign. Laura and Uncle Hank were able to come up for a visit, so that was nice. Tomorrow I'll go back to the doctor for more labs and a check-up. I think I'll ask about the process of restaging and getting discharged since my 100 days is only 3 weeks away!!!
"Ask and it will be given to you, seek and you will find, knock and the door will be opened to you. for everyone who asks receives, he who seeks finds, and to him who knocks, the door will be opened." Matthew 7:7-8