Day +15

About a week earlier than expected, I am settled into a nice apartment listenening to laundry and enjoying samplings of groceries, of which I can taste either salty or sweet--it will come. Van has helped me figure out my deluge of medicines. Tricia will take over for awhile. I am so weak, but I have noticed improvements just today in independence. Aside from being worried that I will mess up my medicines, I am very anxious about sunlight. I have to wear sunscreen to go out of the house, and too much sunlight can trigger a very bad reaction. I'm hoping that the need for the extra caution will be unnecessary in six months or so. In the meantime, I'm really enjoying the space in the apartment, and I'm so weak that I don't feel like doing much of anything. I don't look much like myself, but I know that will return in a few months, too. I expect to go to the doctor's office about 3 times a week for blood levels and for transfusions. So far, my complaints have been small compared to most, but it is still hard. I'm so thankful for the caretakers and the people (like Van and all the other family) that shuffle things around to make this work.

Day +11

Did you know that the little colored dots (bubbles) along the side of a skein of fabric are the colors in that fabric that will go with others? Handy. I thought they were a bar-coding something from the company.

All 3 little ones have aches and pains, so there Daddy left back to give some TLC to them--after my coaching (with some sympathy) session. Van's mom took her leave, and I'm hoping my parents stay away until we're sure what the culprit's are. We need all of the household to be in tip-top shape so that we can keep the germ-enemy at bay. I'm down to one channel out of 5 of my IV pole. It looks so slim and svelte. It is a possibility that I could go to the apartments ahead of time, but there still needs so much to happen before that could happen. I'm waiting for my special platelets on Friday. The other numbers are engrafting well with not too many tricky side effects.

For although I am definitely week, I am motivated, and the nurses and staff have always acked that they would be thrilled to be my walking partner. So sweet.

When I ask Van on a work day (or this day), He is sure to say, "ERADICATING PESILANCE and DISEASE." I've already offered to make him a costume, but he's decined. So let that be our prayer today, That the Lord would shine His light so brightly, and that His glory is so apparent that our cells rise to praise Him." I borrowed that last bit from a conference that was able to enjoy.

+11

We are thankful to report that as of last night the high fever/chill thing has abated. There is still much mystery into why this happened, but it seems to land more on the engrafting (maturing and "settling in" of the bone marrow stem cells). I have felt frustrated for the limitations of normal drugs because of interactions with other drugs that could normally solve a fever. Many of my side drugs have been changed, and then eliminated, and changed again based on any lab reports coming in. Besides feeling really lousy 70% of the day, I am just weak, and depending on the drug, tired, but in a no-sleep way during the day--most nights I'm getting some sleep now. I have a new rash over a good percentage of me, most likely from low platelets, but also with some new stuff from a small "rejection", which my doctor said a small amount good is and helpful. (It in no way indicates that the process is unsuccessful....it is a long process.)

We are also thankful to report that I do have a small white count that means that my donor's cells are finding there place in the bone. Tomorrow, I expect to get more platelets and some blood (haven't had the blood on this go round). I didn't expect the engrafting so soon, so although it is bringing it's own challenges, it seems like my mind can rest on that.

Van didn't feel good about the shape I was in this weekend, so he came back to stay with me Tues and Wed. He's a tough coach. He reminds me to eat, tells me to eat more, walks with me and physically stands there with a bottle of water until I take it. He also gets my toothbrush ready and finds my shoes under the bed. I'm proud of him.

I understand now more of the function of "the beast" for lung improvement mentioned before, and one of my sweet nurses help me write out a schedule that will help remind us all. The beast did get decorated as an elephant, but it is not cute, nor will it ever be.

Thank you for all your prayers, Be joyful in hope, patiend in affliction, faithful in prayer. Romans 12:12.

+10

My sister got to visit me for two nights earlier this week. Her sweet neighbor took care of her three children while she came to help me out. Along the way, she made friends up and down the hallway, and made a Target run for myself and my friend. Tricia is an intuitive person, and anticipates needs well...."I bought me some Chocolate Cheerios, and we can share. Should I leave this Nutella for Van?" It is nicely placed on top of the refrigerator, so I look at it all day and think about the way that she has always, since our childhood, made food look good. When it was time to leave, I had to practically push her out the door. She swung by Waco in time to see the top of the lot that we are purchasing, visit with my parents and have Zane's "on-his-birthday-birthday" with BALOONIES! They set up Skype for me at the table so I could watch, which probably felt dorkie, but I appreciated it. Mom had taken Zane to Wal-Mart to choose a "small" cake-HA! She said that he consistently pointed to chocolate--my kind of boy. After cake was presents and Zane did his little happy bear dance after each one. Cute, cute. Then, my sister gave them some caution tape and they headed out to make mayhem of the back yard. Fun times. This whole week I have been touched yet again my by sister's and husband's compassion.


Yesterday one of my friends went home, and she was ready but very nervous. The has three young children, a husband who is out of a job. Her mother cares helps with the children. They were going to stay at a one of their freind's places for the night because the air conditioner is broken. Yesterday, also, another one of my friends, and her mom moved to the apartment complex where I will be.

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That really just happened.

I've had several days of fevers and chills. The chills are called "rigors" and at first they were a violent shaking. I've learned to be quite the squeeky wheel, because the earlier they put the meds in my line the less likely the fever to follow will be high. There have been heavenly breaks between those times. In one of those breaks, my friend that was being discharged came to the room. I got to pray for her, and she was really moved. Definitely a moment when "the Spirit is willing, but the flesh is week". Another visit from a church friend came during one of those difficult days, but the timing was just right.

My least favorite lung-helping device right now is an elephant head shaped plastic thing. "Inhale into this tube up to this level." It is a beast. "We have some Robitussin for you if you can't stop caughing." When I get the energy, I'm going to get a sharpie and label it "the beast" and put beady little elephant eyes on it.


I've had thousands of strange, images go across my mind in the last few days. I've been in and out of sleep in a matter of seconds. I stay perfectly still so I don't trigger the rigors and so that maybe, just maybe, I can go back to sleep. My most favorite one is a news update with a very official President Obama announcing to the nations that he is going to dye baby chicks as a gift to our country for Easter. That made me smile. Here's another (just happened 3 seconds ago example): A man on a museum hardwood floor with a chalk rabbit drawn in front of him. "Did you cut your skin?" he asks in a thick country accent. More realistict is when I think Van, Tricia or my nurse is by my bed and asks me a question. I answer (out loud) something like, "I think it is on channel 53." I've done that one a lot. Next, I'll be using my Sharpie on a volleyball.

From what I understand, we're moving from the effects of chemo to engrafting stage, so despite the predicable unpleasant side effects we're making progress.

+9

Well, the last few days have been battling the mysterious fever of the unknown. Susan is pretty worn out, some of the temps have been as high as 105. The Docs are probing all possibilities, please continue to pray for no fever, no chills and energy. Also, that we can dispose of the evil ice blanket soon - its bittersweet. The good news is that there are no signs of rejection and a sweet friend down the hall has been discharged home. Susan and her new friend had a good talk yesterday prior to her departure. We will keep it brief today, all of your friendship is deeply appreciated. I will work on my penmanship, but expect Susan to update in her expressive ways next time.

+3

The reason that hospital food gets a bad reputation is that people are sick when they try to eat it. I actually enjoyed the food when I was first admitted-maybe a little too much, but the chemo is setting in, and now my banana is the enemy. How can a banana be anything but a banana? It is not the banana's fault. But I eat it, for hours enduring Dancing with the Stars to see what Ralph Macchio (aka Karate Kid) has been up to, just for an untimely nurse deciding that it was the moment for a visit. No. I'm not going to watch again tomorrow. I at least got to see an interview with him to know that he has been married for 24 years now. That's pretty cool.

My complaints are small: a little hot/cold, wacko-o stomach, strange aches and a weird splotchy appearing/disappearing/there it is again/now disappeared rash on half of me. Now I'm writing about rashes. Oh, and I'm not sure how, but no sleep for days--that is not much of an exaggeration. I think it may have to do with the bigtime steriods a few days ago. I'm pretty well spent. Tonight may be the night.

I'm still able to investigate property buying strategies (Van and I should close on a little piece of land near the end of the month--yes, we're being careful and seeking counsel). I can also shower using one hand and NOT get my Press-n-Seal covered central line wet. I can walk for a little while a few times a day. I can recognize my ankles now.

My friend down the hall is not doing very well. I don't know much, but I know we can pray for her like her mom has prayed for me. She even brought by a devotional book for me the other day. Her situation is a harder one than mine, and they could use a boost.

My blood counts are dropping like they are supposed to. I'll probably need to take a break from writing so that I can put energy into other things.

Psalm 24 is great. Here's a good line: Who is this King of glory? The Lord strong and mighty, the Lord mighty in battle.

Transplant Day

Done. It feels really good to be done.

The day went pretty smoothly. The bag o' goods arrived via courier in a Igloo LunchMate with an orange biohazard sticker on it. The chaplain said a beautiful short prayer, took her leave, Van said a sweet prayer, and my nurse tended to me for the next several hours non-stop. I don't know if she left the room at all. It is a very important job, but, oh, her days must get dull. At least Van was there to chat with her about Poland, and socialized medicine and spirituality. I tried to rest but the blasted Lasix got in the way again...and there were two people staring at me for hours, and talking about Poland, socialized medicine and spirituality. I was so relieved when she rinsed out the bag with saline (and put that in me, too!) Everyone was very impressed with the large donation. It should fit the bill quite nicely.

I am humbled and thankful for the diligent prayers and for the trust that people have in the Lord and His healing power. I went in and out of focus on God today (at some times I literally couldn't make a complete sentence with the drugs), and it was a great joy to remember that other people were petitioning for us.

I've finally relaxed from the events, and can move onto an enjoyment mode. Van is at Kroger for a bit of a break, some supper and to do my bidding. We're exhausted, but so very thankful and encouraged.

Van noted that my next door neighbor has the last name "Bauers" and has started calling him "Jack" (as from 24, the show that entrigued us for several years.) I haven't met him yet. At first I thought I should feel safer having him next door, but then I thought about it and realized that the next 24 hours could mean big trouble for all of us!!! Okay, that was silly, but it made Van laugh anyway.