On Tuesday Jill went in for her latest appointment for an iron infusion, blood work and consult with our doctor, the third in about a week. A couple of flags came up in her numbers. Her hemoglobin count was a whole point lower again, which is a bit of a mystery because from what we can tell the bleeding has decreased. Hmm. We thought that once the bleeding was controlled that the numbers would stabilize. He asked if Jill had been experiencing any heartburn because maybe there is another source of bleeding that is going undetected. She has had some heartburn so we think that could be a possibility. So we are taking meds for that now, just add it to the list. One theory is that the multiple medications themselves could be irritating her stomach and causing a little bleeding. We’re not sure so on goes the search!

Jill is feeling stronger this week and is slowly gaining more energy each day. The Physical Therapist really stretched her on Tuesday appointment which one, got a little more movement out of her leg, and two, caused the next couple of days to be more painful. We are encouraged though at the baby steps! Today is another PT day. Prayer is appreciated.

The kindness shown by local friends has been humbling.  We are so grateful for the meals prepared with love, and donations of much needed “things”. After reading our latest blog, some friends from a home group at church purchased a new mattress for Jill so that she can transition from the couch to a bed soon. And one very generous friend even donated a treadmill for her to use (eventually).  It is so heartwarming to see smiling faces of loving people walk through our door with such care and concern. It’s healing. It’s like God walks through the door with soup and cleaning supplies.

It’s no small thing.
I have not stopped giving thanks for you, remembering you in my prayers. Ephesians 1:6

Last fall, Jill and I made several trips around the country for “Home Meetings”. These are meetings held in friends and / or sponsors homes to report on what we’ve been doing here recently at FSM and what future projects and outreaches are planned. The people attending these informal meetings are made up of folks who have supported us for many years as well as some who don’t know us at all but were invited by our friends who want to introduce us to people in their communities whom they think might have an interest in the kind of ministry ops we do. We have to say, we love these meetings. We love talking about what we’ve seen God do in people’s lives in Thailand or India or Albania or the US. When we take the time to reflect on what we have seen God doing and then invite people to be involved by either praying for the outreaches specifically, supporting FSM financially, or even volunteering themselves, it is very inspiring.

It was on one of these trips that it happened. The approach into DTW (Detroit) via plane that November day was one of those that you laugh about later but at the time had you mentally going through the list of details, including but not limited to, “Did I pay my life insurance premium?”, “Will the kids know where to find important docs?” or ”What jokes will my brother Rodge tell at my funeral?” (the latter giving me a sudden drive to survive!). For several minutes the wind seemed to throw our 737 around from side to side and up and down, quite suddenly at times. I’ve been on similar flights before, but you know it’s bad when women start screaming around you. At least I think they were women’s screams. I suppose they could have been those sounds men make when, because of a sudden jolt of fear, they involuntarily let out high-pitched scream-y noises and then act like it was the lady next to them. Even the inebriated guy across the isle looked like he was praying. We hit the runway hard and bounced back into the air a few times and then did that swerving thing when you have the sensation that the whole airliner could roll or flip. I could imagine the pilots’ white knuckles on the wheel, trying desperately to hold her straight. For what seemed an eternity, we were out of control, overwhelmed by the elements, and in serious trouble.

Then, in seconds, the jet’s nose came aright, we slowed to a calm speed and started taxiing toward our gate. Passengers applauded…and finally exhaled.

We’ve been looking for a way to describe what the past few weeks have been like to us as we made our final approach toward home, not just on the drive from Minnesota to California, but into what we have now called our “new norm”. Each day has had its challenges and we have found ourselves bobbing and weaving through the unpredictable circumstances each day brings. In reality, unlike the Detroit experience, this landing may take a while, maybe several months.

The drive through Colorado, Utah, Nevada, and California (January 10-12) was long but fairly uneventful. Only one close call on the road caused by a pick-up truck losing control and spinning three rotations about 500 feet directly in front of us. Other than that, we made the trip by breaking it up with stops every two to three hours to get Jill out to walk around. Though painful, these stops kept her leg flexible and lungs filled with fresh air. The last day was long, but well worth pushing through, as we knew the kids were waiting at the end of our journey.

The greeting we received when we pulled into the driveway is something we’ll likely remember for rest of our lives. As the van stopped, the house front door opened and out poured Aubrey, Allison and Trevor, along with Aunt Jamie and Grandma. The girls opened my driver’s door and both were practically in the front seat with me, their arms wrapped around me. We cried and laughed at the same time. The side door was thrown open revealing mom in the back of the van. The kids clamored to get to her but it was hard because of all of the well-placed pillows, blankets, ice coolers and sleeping bags. So they stepped back a bit as I helped Jill get  into a sitting position at the door of the van where they were finally able to hug her.

Then came the trip from the van to the sofa. I pulled out Jill’s walker and she slowing pulled herself up to a standing position. Then, turning towards the door, she started her “Tim Conway old man shuffle”, inching her way to the first of three landings leading up to the front door. As she paused at the first landing and turned to hoist herself up that first step, it was an emotional moment. This was the step we kept referring to in Physical Therapy sessions in the hospital. During the practice steps at Mayo, either the therapist or I would say, “Imagine this is your first step home. You’re walking up the stairs to your house”.  It was picturing doing normal things at home that would motivate Jill to press through the pain. Slowly she placed her “good” leg up on the step, braced her arms on her new blue Walmart Walker, took a deep breath and then, with an exhale, pulled herself up onto the first landing. Success! She repeated this process twice, inching her way to the door, but by the time she got to the last step to the house she was whimpering and shaking, trying not to cry. I have learned to let her do as much as possible by herself to build up her muscles and endurance. But she had hit her limit. So I put my arm around waist and lifted her over the threshold and through the front door. Once her walker was in place and pointing in the right direction, she started toward the living room where the final two steps down to the couch were waiting. I steadied her but she was able to do most of the work herself. Making it down, she got to the sofa (chesterfield) in the living room where the kids had made a nice bed for her (and thanks to the very rigorous work of Aunt Jamie and Grandma, the house was spotless).  She sat and pivoted her good leg up onto the couch and then I lifted her swollen and wrapped leg slowly into place and lowered it unto a pillow to keep it elevated.

Unlike our experience on the plane, no one applauded, but there was a collective sigh of relief.

I think the shock of seeing their mom so frail took the kids back a bit. No one knew what to do at first. On the one hand, they were thrilled to see her, but on the other, they mentally took in the obvious, that mom was not back to normal.  After taking a moment for her body and mind to relax into the fact that she was lying on her own sofa, in her own house, Jill began to weep. She sobbed uncontrollably for a few minutes and everyone was very still in the room, kind of taking in the situation and not knowing what to do. Finally, someone asked, “Are you ok? Are you hurting? Do you need something?” Jill mumbled something no one could understand at first.  When asked again she said, as with an exhale, “I’M SO RELIEVED!”   Even though she was suffering so much, being in her own home surrounded by her family, was by far the best of all medicines.

The past few weeks are a little hard to describe briefly. There have been some beautiful highlights when we experienced great care from loved ones and friends, or when all the meds “lined up” perfectly to produce a day of reduced pain. Then there are low days when, for some reason, we got behind in the exact timing of the pain meds and played catch up all day.  Those are not great days. I watch Jill fight to keep a positive attitude because she knows we are all affected by it too. I try to reassure her that it’s ok to be weak during these times and that she needs to relax into the reality of the moment, rest when she can, and gain some strength to go at it again tomorrow. We are all facing this challenge together. We can take heart in knowing that we are not alone in this. Together we will find the strength to shrug off self-pity and seek to find the joy in each day. This isn’t some line from a self-help or positive thinking book. It’s the reality that we face as we go through the ebbs and flows of this life we are presented with each day. Not how we wish it were, or how it will be, or even how it may have been on a great or memorable day from the past, but today, as it is.

A Word of Thanks (and *)

There is really no way for us to adequately communicate how grateful we are to the dozens of people who have been there to help lend a hand, cook a meal, buy some groceries, do something nice for the kids, run an errand, show up and just start doing yard work, fill up the car with gas, or… well, you get the drift. Or, to the hundreds of people who have sent letters, texts, emails, or cards of encouragement or well wishes. Or, to the thousands of people who have prayed so fervently for healing, strength and supply for Jill and our family over the past couple of months. Thank you. With the coming months being uncertain as far as ministry operations as concerned, we greatly appreciate your patience and understanding.

Needs

Many people have asked us what our needs are during this time. To be honest it’s been hard to answer that question because much of what we’ve needed is personal in nature. Typically when asked this I can rattle off a laundry list of the most recent needs for an overseas outreach, or equipment for a C4W event, or finances needed for a team member raising support. But now the needs are more… basic? Our church has organized a meal program where people can sign up to bring a meal, which happens every other day. Seems like a small thing, but this has been a God-send.

Because so many have asked, I am including a list of “Needs” that will likely be adjusted as time progresses. In some areas, I’m guessing, trying to anticipate future stuff.

House Cleaning: 1-4 hours per week

Yard Work: 1 – 200 hours per week!

Meals: Sign up at http://www.takethemameal.com/meals.php?t=UBGB6662

Exercise Equipment: Eliptical, Tread Mill, or Stationary Cycle, etc…As Jill gains mobility, she’ll need to exercise regularly to build and maintain overall health, and keep clots from forming again. This is a significant life change for her. I am keeping my eye on used equipment on Craigslist. If you know of anyone getting rid of such items, please let us know.

Construction: We are planning to remodel the bathroom to make it more accessible for Jill to get in and out of the shower. Our plan at this moment is to accomplish this with two crews of able bodied volunteers while we are at Mayo for our follow up consult at the end of March. We guess it will be a 2-3 day project. We’ve done this for other missionaries and it is very organized and makes for a quick but thorough project getting finished. I will have a contractor in charge of the project and will supervise. I am making a list of interested volunteers. If you are interested, send me a personal email and I’ll add you to the list and keep you informed of the details. Email: geoff@fullsail.org.

Finances: Because we have had to postpone or cancel most ministry programs through May, FSM will no doubt feel the effects of lost ministry income and we’ll also be stretching on our personal finances. We are facing the coming challenges, though, with a deep trust in God to provide and supply all of our needs, and Who happens to have a very long track record of faithful care for His kids.

*  An Apology

Those of you who have been thinking of us and breathing prayers of health and help and good for us, I can’t help but feel a little sad that I haven’t communicated more regularly when so many have used this blog as a way to keep up to date with Jill’s progress. All I can say is that I will do my best to keep these updates coming, not only to inform you, but it is cathartic for me too.

The truth is, there have been some very overwhelmed moments for us as a couple, as parents, as a family, and as individuals over the past month or so. And by moments I may mean hours… and by hours I could mean days… and by days I might mean weeks… and by weeks I… just kidding. I think. Sort of.  The truth is, we’ve had some very difficult days with much pain. Balancing the needs of my patient with the needs of my family and providing, well, just providing.  But, the Truth also is, “I will never leave you, never forsake you. I am with you, even to the end. And I do not condemn, I forgive and give life, very full, abundant, satisfied life. So always come.”

(Hebrews 13:5, Matthew 28:20, John 3:16, John 10:10, John 6:35, 37 & 44, Hebrews 4:6)

Here is a favorite Roby Duke tune.

Cathedral Walk

this cathedral lane through which I walk
is far to grand for haste or talk
it calls for gazing, it calls for dreaming
seeing all the things that thrill my being
all the loved ones that bless my soul

I found my way
I know to make me a shelter under the tree of life
there my God everlasting
at the end of my rope He made a swing for me
and I swing without fear of falling

the older trees show the young ones how
with foot on foot and bow on bow
to earn the grandeur that heaven meant
as they reach for sun and firmament
a simple wildflower lifts its head
and I stop until a prayer is said

I feel the wonder
I know to make me a shelter under the tree of life
there my God almighty
at the end of my rope He made a swing for me
and I swing without fear of sorrow

the cathedral lane through which I walk
is far too grand for haste or talk
the varied songbirds, they dart and say
this is God’s wondrous world
tomorrow may not reach a dawn
with nightingale I sing alone

I know my way
I know to walk in the shade under the tree of life
there my God everlasting
at the end of my rope He made a swing for me
and I swing without fear of falling

without fear of sorrow

without fear of tomorrow

- Roby Duke

We packed, showered, said hasty goodbyes and sincere thank you’s to Aaron Lightner and headed the van toward home. As if on cue, Jill began sobbing. It was the best feeling in 3 weeks.

We decided to drive home instead of fly because we felt it was a little more of a controlled environment. On a plane, if her pain meds wore off or something unforeseen happened we’d be sort of stuck. But by driving, if something happened or she needed to pause and adjust her meds, we could just stop.  I made Jill promise me to exercises in bed/seat. Every two hours we will stop for meds, a bathroom break, and more exercise.  Jill had chili for lunch and chicken nuggets for supper, making me wonder if she was reverting back to her childhood. Hmm, were there “nuggets” back then?

We were a able to make a connection with Dr. Havard’s office in Visalia. He will read Jill’s INR’s on Friday and be able to adjust Jill’s dosage of Warfarin by then.

Jill had a great connection by phone with Erin, now back at APU. She is thrilled to be “home”. Jill also made plans with Aunt Jamie for celebrating Aub’s 14th b-day tomorrow. They’ll celebrate it tomorrow and we’ll just celebrate it again on the weekend I guess. We drove 714 miles today and then stopped for the night in Ogallala, NE, thanks to the help of Bonnie and David Dick who got our hotel booked and is following the weather reports and mileage. We were tired by anxious to keep moving. We’ve just gotta get home!

Up and out the door early today. We had a full day:

7:40AM – appt with Ob/Gyn at Mayo to make sure no complications from that angle. Dr. Johnson and his nurses where some of the most gentle people we’d met there so far (and that’s saying something).

8:40AM – blood work for INR to determine Warfarin level.

11:30AM – meeting with Dr. Tollofston she suggested maybe Jill has “CLOVE” instead of KT. Hmmm!

3:30PM met with team to receive INR level and prescription for Warfarin until home.  We took it to the pharmacy and I thought the pharmacist said the meds cost was $3800.  I swallowed hard.  Then at the payment/pick-up window the clerk said $38.00!  My feelings of stupidity were overcome by feelings of relief.

No appointments this Sunday! We tried to get Jill’ meds schedule written out and sorted. Jill was in pain for the first half of the day but by the time mid afternoon came around she was starting to feel better. Had an afternoon visit by Steve and Rosie Koebele, Facebook and ICVM friends. As we talked for a while I was struck by how “normal” this was. Man, it is great to be out of the hospital!

Since Jill’s INR numbers were good again today, Dr. Shah decided she could be released and work through the list of consultations from the rest of the physicians as an outpatient. We were going to leave the hospital! We spent most of our day there, going through the process of preparing to leave and setting up appointments for the coming days and writing the prescriptions for the meds we’d need to bring home. We said goodbye to Dr. Shah with whom, in addition to Dr. Jenad and the staff, we’d walked through some very difficult days. We were able to thank him for sharing his great knowledge as well as his skilled bedside manner with us. We told him that many people had been praying for him as he cared for Jill and that God has truly blessed him with a gift.  Jill hugged him tightly and told him she was indebted to him; she didn’t even know how to say thank you.  She cried.  I think he cried too.  As we walked out of the room where we’d lived for the past two and a half weeks, we were greeted with well wishes from several of the nurses who had cared for Jill so professionally and tenderly.  God bless them all.

At the pharmacy, we were quite overwhelmed by the number of medications and the detail of the instructions which came with them. Finally, around 6:30, we left for our friends’ home, the Lightners, where we’ll be spending the next couple of days. We picked up supper on the way home, but Jill just couldn’t eat. She was beyond exhausted.  So we just got her to bed and prayed for a really good night’s sleep.

Jill awoke not feeling well emotionally. She told me she was feeling heavy and anxious. As I probed with questions to try to understand where these feelings might be coming from, she told me she had been thinking and even dreaming about this story on the news the night before about this young teenaged boy from the local area who had gotten injured while playing hockey. The doctors had tried to do something for him surgically but in a press conference announced there was nothing that could be done and that he would certainly not ever walk again or have use of his arms. He was a star hockey player for his school, respected by his peers and loved by his family and friends. Everything changed in an instant. There was nothing to be done. His life will take an unforeseen and difficult course. Jill started thinking about her situation with the pain being so intense and the fear of clots forming and floating through her body. How that, in an instant, everything could stop or change dramatically without us having much of a say. Life doesn’t always go as planned. Fear like that is real and can be debilitating.

Jill was also missing her kids terribly and she was mourning the fact that she had lost the three weeks with Erin she would have had over Christmas. Her knee was really hurting throughout the night so pain was a factor as well. What do you do when the pain is so great you just can’t see straight, or your circumstances are such that you can’t see an end in sight, or when the grief in your heart makes your every cell feel drained of life? No drama, just one of the moments of reality that likely most all of us face from time to time but scarcely acknowledge or seldom talk about. No clichés here. No trite words of religious verbosity. Real uncertainty catches up to us and fear tries to stare us down. Life gets very basic when you face death, in that moment when you realize this could be “your time”, though you’d planned so much more. There’s an uncontrolled-ness about it.

In that moment when there is nothing but the unknown before you, trust is about all we have. Emotions can run amuck in your mind and you can lose you sense of surety in things that just five minutes ago you were absolutely certain. For me, this is when I need to draw on what I have previously, in times of non-crisis, chosen to believe. Like simply believing what Jesus Christ said about the human race, thus, I would be included in such divine rhetoric. Jesus Himself said, that God loved the world so much that He gave His one and only Son, so that if anyone would believe in Him will not perish or die but would have everlasting life. And, that God didn’t send His Son into the world to condemn it, but to save it. (my paraphase from John 3:16&17).

So today I choose to believe that no matter what my circumstances are at present, that my Father has me in His secure embrace of love and unmerited favor. And, that if I at times give in to fear or lose my way, I am more confident in God’s ability to hang on to me than my ability to hang on Him.

Jill and I listened to a voice mail from her Dad in which he quoted these reassuring verses.

Isaiah 43:2

New International Version (NIV)

² When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.

And so we leaned in and trusted.

We’re still waiting for Jill’s IPTT level’s to reach the sweet spot between 2 and 3 something-or-others. Once there, we switch completely to the Coumadin.  It’s a very slow process and the doctor’s say it’s different for everybody. Looks like another day of monitoring ahead.

Physical Therapy (PT) is not one of Jill’s favorite things to do. Necessary? Yes. Enjoyable? No. The therapists want to find that place where you are pushing yourself but not hurting yourself.  Today Jill was pushed to her limit by doing what I call, “The Moon Walker” which is basically walking backwards while using a walker. It caused A LOT of pain and she cried for a while. I tried to lighten the mood and give her some inspiration by singing Michael Jackson’s BAD, but it didn’t produce the desired response. The great thing about Jill having to use a walker is that she has to use it to support her weight and thus her slapping hand is occupied.

We heard today that on Monday we have another appointment with Dr. Tollefson, the Dermatologist who is the very first doctor we met with at Mayo.  She has some ideas about Jill’s original diagnosis of KTWS and believes Jill may have been either originally misdiagnosed or that she may have other conditions in addition to KTWS. Well, unbeknownst to us, she has recently partnered with Dr. Discoll, a renown cardiovascular doctor who specializes in Klippel-Treanuany Syndrome and with whom we have been trying to get an appointment. He is not taking on any more patients but now we are already “in” the same office through our appointment with Dr. Tollefson. These are some of the doctors we believe will help us get to the bottom of Jill’s condition and help determine the best course of action regarding treatment for us in the future. We are so thankful that this appointment came through on such short notice.

In our morning consult with Dr. Shah he was amazed and we were encouraged by how Jill was responding to the Heparin. The goal is to get her to “bridge” from Heparin in the IV to Coumadin (Warfarin) which is taken orally. They were watching for negative affects such as any increase in bleeding. None! We are encouraged and feel like we are making progress, slowly but surely.

So…several months ago we were having our usual family fun night with the kids and we had put in a movie and were eating pizza. The lights were dimmed and we were all pretty into a movie that right now I don’t remember. About half way through the movie Jill wanted more Pizza and went back into the kitchen in the dark, grabbed a piece of pizza off the counter, “nuked it” in the microwave and came back to the living room to watch the movie. She noticed that the pizza tasted…”chemically”. She went back into the kitchen and threw on the light and saw that her piece of pizza was covered in ants. The only thing different from her piece in her hand and the rest of the pizza on the counter was that hers were slightly more…cooked?!

This caveat is noteworthy because before every change in drug or IV drip going into Jill’s arm the nurse has to “flush” the port with saline. This produces a familiar taste in Jill’s mouth that she couldn’t, at first, put her finger on. Finally, it dawned on her and she blurted out to a somewhat confused nurse that the flush tasted like ants. I’m sure we’ve added a few stories to the nurses “You won’t believe what that patient just said!” list.

Dr. Shah, Dr. Susan and Gail (Supervising Nurse) entered the room with smiles and enthusiasm. They announced that they believed Jill was in a good place to be released by this afternoon. We were shocked and excited! He explained that he had spoken with Dr. Dozois (Colon and Rectal Surgeon) about the possible Colectomy surgery and that Dr. Dozois believes that because of the risks involved, and the way Jill seems to be managing her symptoms so far, that now is not the time for surgical intervention. It would make more sense to first try other methods to manage her condition.

Then Dr. Shah further explained that the process of getting her blood to the correct levels would require us giving Jill shots into her belly on our own over the next couple of days. These were subcutaneous shots and a bit more risky than IV or pill.  However, our guts felt safer with sticking with the IV until she reached the therapeutic level. We hoped we had made the right decision, not erring on the too-cautious side. Interestingly, at around 2:00 p.m., Jill started with pains in her upper right back that worsened as she tried to breathe.  An EKG was immediately ordered, along with a chest X-ray. Dr. Shah called the sound he heard in Jill’s chest a “rub” between the layers of her lung lining.  Later, he defined it as *pleurisy.  Pain meds and knowing that everything was being carefully watched helped reduce the pain and stress.

Later that night they began increasing Jill’s Heparin intake and there were a few tense moments as the staff calculated the exact level of Heparin. We prayed, and waited, and prayed and waited…. By the time she feel asleep the meds were well on their way. Even so Jill woke up often throughout the night with some anxiety. I’d wake up and stroke her head and try to calm her. We are so glad I’m spending the nights with her here in the hospital and oddly enough, I’ve gotten pretty comfortable sleeping in my clothes. If I really feel like relaxing, I kick off my shoes.

A very reassuring truth.

God is a very present help in trouble. Psalm 46:1

*Pleurisy occurs when the double membrane (pleura) that lines the inside of your chest cavity and surrounds each of your lungs becomes inflamed. Also called pleuritis, pleurisy typically causes sharp pain, almost always when you are inhaling and exhaling.

Pleurisy occurs as a complication of a wide variety of underlying conditions. Relieving pleurisy involves treating the underlying condition, if it’s known, and taking pain relievers.