Sunday, May 29, 2016

Ranch Boss vs. Wegener's - Part 2

March 21, 2011 was the first day of Keith's extended stay at Swedish Hospital in Seattle as he was diagnosed with Wegener's and underwent the beginning of what would be a long succession of treatments. On this day, he was down 20-25 pounds since his mastoidectomy at the beginning of the month, and he had lost about 30 pounds to date; his voice was entirely gone; an increasing number of small purple spots were showing up under his fingernails; the left-side facial paralysis had not improved yet; he had extreme pain in both ears that he could not describe; he was severely fatigued all the time; and he had a rash and bumps on his face and neck that kind of resembled razor burn. Despite the long list of things going on with his body, Keith had the best attitude - was hopeful for a diagnosis - and was ready to jump into whatever treatment was needed to get him back on his feet. Without a doubt, his ever-positive attitude made a difference over and over again.

That Monday in the hospital was a busy day. Lots of tests and lots of contact from all our family and friends to show their support. By Tuesday, March 22 I was able to give an e-mail update:

First of all, thank you everyone for your prayers and support…I just can’t say it enough!  I didn’t know it was possible for two people to cry as much as Keith and I have; we are overwhelmingly blessed and humbled by the love you’ve all shown us.  This has been an experience like no other, and we are in constant thanks to God for what He has done and what is to come.

On Sunday (March 20), Keith had his most difficult day so far, in terms of pain.  The doctor and I talked several times that day, and he spoke with other doctors as well, to come up with how they wanted to treat Keith yesterday.  We saw 2 doctors in the morning, and they confirmed it was best to admit him to Swedish Hospital, where they could expedite testing.  They did a cardiac ultrasound, which came back normal; various blood tests, which we’ll see results of starting today; took a chest x-ray, which came back with abnormal results, showing a large mass; and did a CT scan of his chest.  Today we'll hear more about the CT scan, and they’ll also do a bronchoscopy to get a better look at his lungs.  So no definite news yet, just lots of things going on that should provide some answers soon.

In the mean time, Keith is not feeling well, but God is giving him the strength and attitude he needs to keep pressing on.

I’ll continue to send out updates as we know more.  If you’ve called/emailed/texted me and not heard back, please know that we love you all and are thankful for each of you.  It’s been a little overwhelming, and I have not done the best job of getting back to everyone individually, but we greatly appreciate your support.

On a lighter note, in Keith’s absence, I'm realizing all the things that I need to learn to do on my own. I came home late from the hospital tonight and at 2am, the dog started barking wildly.  I opened Clay’s window to find 3 coyotes standing about 10 feet from the house, staring right at me!  I freaked out and tried to shut the window real fast so they wouldn’t attack me (yes, ridiculous, I know), and in the process, I managed to get it stuck in the open position.  After 5 minutes or so of messing with it, I gave up and ran to the garage to get a gun, at which point I realized I don’t know how to load or shoot a gun.  Just great.  So I shined a spotlight in the fields, banged some pots and pans together, and did my best to yell and scare the coyotes, who were out there bugging the mama cows and their babies.  It wasn’t effective; they just ignored me.  Finally I gave up, came in, and said a prayer that the mama cows would protect their babies tonight.  The dog is still barking, and the window is still not shut, but I’m going to go to bed and I'll think about it again in the morning. J

Thank you all again for your prayers and love.  I can't use the word “thankful” enough, but that’s what we are!  I’ll update as I know more.


As I stop and think back on that time in our lives, it's almost more overwhelming now than it was then. It was like every person we knew rallied to provide help and support in some way. I feel like an outsider looking in as I go back over the hundreds of e-mails from people, and the notes I took of what happened each day. 

Our moms did the best ever job of trying to keep things as normal as possible for the boys in our absence. Being away from them was so hard on us, but at the same time, we wanted to protect them from some of what was going on in the hospital; it seemed like more burden than they should have to carry. Our family and friends stepped up to take care of everything on the ranch, and began to fill our fridge and freezer with meals, expecting that we'd be returning home very soon. I would leave the hospital late each night, usually well after midnight, and return in the morning, bringing a new stack of mail and paperwork for us to tackle each day. 

Something that sticks out in my mind is the presence of our friend and church pastor, Scott Myers, while Keith was in the hospital. Keith didn't want visitors, so aside from family, Scott was the only visitor to spend much time with us. He was there the day Keith was admitted, and many days after that; Scott would come sit and just "be" with us. We didn't have to entertain him or force conversation; he was just there. There to talk when one of us wanted to, there to listen as the doctors and nurses came in and out, there to pray with us as we waited and wondered about what would come next.  And we didn't ask him to be there; he just showed up on his own, and left the same way. I'll always remember that. 

Likewise, Scott's wife Heidi was reaching out to family and friends on our behalf from home. The day Keith went into the hospital, Heidi rounded up a large group of people who would pray for Keith around the clock. We didn't know about it, until receiving an e-mail from my cousin Sara, who was stationed in Iraq. Heidi had not found people to pray from 1am-3am, when a message from Sara came in, saying she would take that time to pray, as it was mid-day in Iraq. To know that people were praying 'round the clock for a diagnosis and healing for Keith was once again, overwhelming. The power of prayer is greater than I think any of us can grasp. 

March 22: Doctors performed a bronchoscopy on Keith; it showed large, bloody cavitations in his lungs. On this day, he was not given any of the prednisone he had been taking and recalls this as being one of his most painful days ever.
March 23: Open lung biopsy; results expected by the end of the week. Good friends whose daughter has a form of vasculitis visited us in the hospital, they asked about the possibility of Keith having vasculitis (in my mind, I was thinking..."no way"); later that night, one doctor came in and suggested the possibility of Wegener's.
March 24: We began hearing more talk of a possible Wegener's diagnosis. Keith got his first of three 1,000mg steroid doses via IV, in anticipation of Wegener's.
March 25: Second 1,000mg steroid dose via IV; results of lung biopsy confirmed 
Wegener's Granulomatosis.
March 26: Last 1,000mg steroid dose.

The end of the 3 large steroid doses felt like a milestone to both of us, and I was glad to have some progress to report to our ever growing e-mail list that night:

Thank you all again for your continued prayers for Keith and our family!  

Today we received the last of the biopsy results, which confirmed that Keith does have Wegener’s Granulomatosis, a form of vasculitis.  We are thankful to have a diagnosis!  The doctors began the first stage of treatment on Thursday because they wanted to get a jump start on it, even without all the results back. Today he had his last of 3 large steroid doses through IV.  We were told there could be some side effects from the steroids, but he hasn’t noticed any; that is great news!

Keith still has a drain tube in from his lung biopsy, and once that is removed, we believe he will be able to go home.  It is possible that he may go home tomorrow, but more likely on Monday.  In the mean time, the nurses here love him because he is their “easy” patient. J

Tonight we met with a rheumatologist - she will be his new disease doctor - and Keith began a high dose oral steroid treatment (60mg per day, which is high, but seems small compared to the 1,000mg he’s had via IV over the past 3 days); he'll be on that for the next 3 to 4 weeks before tapering off.  Tomorrow he will begin on Cytoxan, a chemotherapeutic drug, in a very low dose, which will increase as he goes off the steroids.  The doctor expects that he’ll be on the Cytoxan (a daily pill) for a minimum of 6 months.  Then there are a few other goodies to go along with that…a stomach protectant, an antibiotic, and so on.

After talking with the doctor, we feel better informed as to what we can expect as Keith gets out of the hospital and back to life as usual. He can expect up and down days…the treatment isn’t going to be like flipping a switch back to his all-energetic self.  His symptoms won’t go away right away, and since each patient is different, there’s no general guideline for when, or if, things, such as his voice, facial paralysis, etc., will return to normal.   And as with everything in life, we don’t know what the disease will look like for him in 3 months, 6 months, or a year, but one thing is for sure…God knows, so we don’t have to worry one bit about it.  We trust that it’s in His hands and that’s all we need to know!

Not much more to report at this time.  Keith is feeling pretty good, and looking forward to moving ahead with treatment and getting his strength back.  We are praying that he goes into full remission and doesn’t have to mess with the disease again.  I am also praying that he responds quickly to the treatment and with little or no side effects. 

We are thanking God continually for the peace that He’s given us this entire time.  There hasn’t been a moment where we haven't felt His presence.  And we are grateful for your love, prayers, and support.  It’s just an unexplainable feeling to know how many people are lifting him up in prayer at any given time.  Wow, that can bring tears to a person’s eyes, for sure! 

Our love to you all, 

So Keith's week in the hospital was coming to an end, and he was very anxious to get home and begin recovery. What we didn't expect was that he wasn't going to be going home quite yet. Swedish would become his home away from home for the next couple of weeks as a variety of things kept him there. My next post (or posts) will cover his remaining 20 days of hanging out in the hospital.

Thursday, May 19, 2016

Ranch Boss vs. Wegener's - Part 1

The thought of writing out a story about Keith's journey with Wegener's (now also called GPA) has been a bit daunting, but today, I finally convinced myself it's time to start. In 2 days, we'll be hosting a fundraising event for the Vasculitis Foundation in support of Vasculitis Awareness Month, so with my mind on the disease more than usual lately, it's been interesting to dig back into our records and take a look at so many details that have (thankfully) become a distant memory. There was little information available online when Keith was in the hospital and I was searching, so I hope that someone may stumble across this post and those to come, and that they'll be a source of information & encouragement.

NOTE - the dates and information described here are tedious, but for someone looking for answers, or a story they might relate to, details are helpful. I SO wanted to find real life stories as I searched, and that's why all the nuts and bolts are included here.
You've been warned. :)

In October 2010 (photo above), Keith and the boys went on their annual hunting trip with my dad. All was good, although I recall around this time Keith mentioning that he was feeling overburdened by his workload, which was something he hadn't ever felt before. He had always dealt well with pressure, and for some reason, things were getting to him now.

The first week of November 2010, 2 weeks after returning home from hunting, Keith woke up with a plugged right ear. He tolerated it until mid December, thinking it would go away. Nothing else seemed out of the ordinary. Finally he went to see our naturopath the middle of December.  After a heavy 3 day dose of antibiotics in combination with natural decongestants, nothing had improved and he went to see our ENT. She gave him a steroid shot, and another round of antibiotics. The plugged ear remained, and the last week of December, he had a CT scan; the scan showed a sinus infection. His ENT decided to make a tiny hole in the ear drum, and ear drainage began; that was a relief. Keith wasn't miserable at all during this time; it was just a pretty mild, but annoying, change from his normal good health.

About a week into the New Year, we took a family trip to California (picture below). Keith would mention how strange this thing was... whatever was going on with his ear... but that he just couldn't really describe it. When we returned home mid-January, his ear felt plugged once again so our ENT put another small hole in his ear drum for drainage, and gave him another steroid shot. Relief again. It was during this month that Keith carried a pocket full of Kleenex and Q-tips because his ears were constantly draining (yuck).

Finally Keith had sinus surgery on January 25th, 2011. The morning of his surgery, he woke up to both ears plugged for the first time. Tubes were placed in his ears during surgery, and they repaired a deviated septum & cleaned infection in both sinuses. When he woke up from surgery, he had lost his voice completely. He quickly regained the ability to talk, but his normal voice did not ever return (his changed voice is one permanent result of the disease). He went on steroids and antibiotic pills for the next 2 weeks.

The next month and a half was pretty eventful...

January 28: After a couple days of feeling great post-surgery (we realized later it was the steroids in his system that made him feel GOOD), Keith crashed. Lots of ear pressure and drainage, and a strange pain began in his head and ears that he couldn't describe.
First week of February: Began a Z pack, prednisone, and antibiotic ear drops.
Mid-February: Keith's ENT, a good friend, referred him to another ENT in Seattle. The new ENT ordered a CT scan that showed a bilateral mastoid infection.
Middle to end of February: Continued antibiotics, but the drainage and pain in ears kept getting worse. What had started as a little fatigue over the past couple of weeks became intense, and he began having sleepless nights. We noticed any time he tapered off steroids, he began to feel worse.
February 28: After a very painful night of strange sensations on the left side of his face that also radiated down his neck, Keith woke up early in the morning with left side facial paralysis. He was given a steroid shot, an antibiotic shot, and a new CT scan was done. Results of the CT scan were not consistent with his symptoms. His current prednisone dose of 30mg was doubled to 60mg.
March 2: Left side mastoidectomy was performed (picture below was taken on the morning of that surgery). Post-surgery, the doctor explained that he had expected to find a badly infected area during surgery, and did not.

March 7: MRI results showed Keith's facial paralysis was not consistent with a Bell's Palsy.
March 9: Saw a new naturopath and began on a detox and immune boosting regimen. Dr. believed this mysterious "infection" may be the result of a root canal done several years prior.
March 10: Pain was at its worst yet; Keith could not explain where the pain was coming from, or compare it to anything he'd felt before; fatigue was worse, and it was difficult to do more than lay in bed; skin rash and bumps begin.
March 12: Left index finger became cold and numb; small purple spots began appearing under his fingernails.

To this point, despite all these things, we were trying hard to live life as normal. Keith continued to drag himself into the office each morning and work, heading to jobsites whenever he felt remotely up to it; he coached Cole's rec basketball team; took care of the ranch the best he could (it was calving season, after all); some of our friends will even recall we were in a couples' Bible study at church, and they just looked at us in shock each week as Keith worsened but continued to show up. We truly were just thinking that the simple answer was right around the corner, and he'd be healthy again any day. But many people, not just our Bible study group, were really becoming concerned, and my voicemail and e-mail were filling up with questions from those who cared, so on March 14, I sent out the first of many updates to those who loved Keith:

Hi Everyone, 

I just want to thank all of you for your prayers and concern for Keith and our family as we try to figure out his health problems.  Today we spent from 8am-5pm seeing doctors; it got us a little farther down the road toward his healing, so we’re super thankful for that.

We saw his ear surgeon, who removed the metal tubes in his ears, replaced them with plastic ones, and ordered an MRI.  He went in for the MRI and found out that the results don’t show anything new.  The surgeon is back to thinking the facial nerve is being affected by the infection in an area where he did not operate a week and half ago.  The surgeon will be consulting with colleagues over the next couple of days to talk about Keith’s symptoms…all the ear stuff and related pain, along with facial paralysis, weight loss, a messed up voice, and more.  We have an appointment to see him again this Wednesday.  Both Keith and I are very happy that we are seeing this doctor; he is confident that Keith’s health will be fully restored, and he really is going the extra mile to help us put the pieces of the puzzle together.  So many people don’t get to experience health care that moves as quickly as it should, and we’re thankful that it has moved quickly for Keith.

After the ear surgeon, we saw a new dentist.  This came at the recommendation of the naturopath we saw last week, who suggested Keith may have an infection at the site of a root canal he had done about 3 years ago.  The naturopath felt it was likely that an infection in his mouth could be the source of his sinus problems, which then also turned into ear problems.  The dentist did find not only the site of the root canal to have a massive infection, but also infections in all 4 areas where Keith’s wisdom teeth were removed many years ago.  So, he now has an appointment with an oral surgeon to get those things taken care of this Thursday.  Again, we are thankful that the doctors are working quickly to help him!

After the long day with doctors, we both feel like things are moving in the right direction. Thank you all again for your prayers.  I would love to ask for your continued prayers for Keith’s strength and endurance, as we know the pain he’s in will not be going away real soon (or at least we don’t think it will), and wisdom for the many professionals who are working to get his health restored.

Through all of this, we both have SO many things to be thankful for.  Our God is so good, that He continues to bless us beyond measure, even in the middle of difficult times!

Sincere thanks to you all!

Over the next days, Keith's health continued to go downhill...
March 15: Saw an infectious disease specialist for testing.
March 16: Started coughing up small amounts of blood
March 17: Oral surgery; the surgeon removed the tooth at the site of the root canal and was surprised to find very little infection. He also opened the sites of all 4 wisdom tooth extractions from many years before.

On March 18th, I sent out another update...
Hi Friends, 

We were feeling pretty positive about how things were progressing on Monday night when I sent out the last update.  I suppose that, for me, it was partially because I knew that only part of our day on Tuesday would be spent “doctoring”, and I was looking forward to the break! J  Well, at our visit to the naturopath Tuesday morning, Keith pointed out that the tip of his left index finger had been losing circulation on and off since Saturday.  Our appointment ended, and the minute we walked in the door at home, the phone rang and it was the naturopath, concerned about Keith’s finger.  So our half day of doctor visits turned into all day again.  Before we knew it, we were headed to Seattle to see an infectious disease specialist.  They did more blood work and found his white blood cell count to be high.  Because of those results, they put him on 2 new antibiotics, which started yesterday.

Wednesday, we met with the ear surgeon and another one of his colleagues.  The blood test results don’t sound like something to be alarmed about…there are lots of variables that fit Keith’s situation which could contribute to that, like the medication he is on, and the stress that his body is under with the infection.  They believe his weight loss may be an effect of his metabolism speeding up in order to fight the infection.  They want to continue to watch the facial paralysis closely, as they think there are minor changes happening, and want to let it come back on its own, if possible.  The voice loss is strange to them, but they’ve now scoped his throat 3 times this week and found nothing to be worried about…just redness and irritation.  There are some other strange, and even gross symptoms, but I’ll spare you the details! J  In all, they still feel that he’s a healthy guy with some strange things going on.  We keep hearing, “You are NOT a textbook case”.  You’re kidding…

So, oral surgery was yesterday and all went well.  Keith had the tooth with the root canal pulled and it was infected, so they cleaned it out.  He also had the 4 sites where his wisdom teeth were pulled cleaned out.  That procedure makes me cringe, but he didn’t even take any pain meds today for it.  He said it wasn’t bad, yikes!

As of now, we have no doctor appointments today.  Then we’ll start up again seeing them on Monday.  I’m praying that a few days of the new antibiotics, along with the mouth surgery done, and all the detox stuff, will make a big difference over the next couple of days.  When I say that Keith has a good day, that pretty much means he can think clearly and walk from room to room in the house.  When I say it’s been a rough day (or night), it means he’s been in so much pain he can’t think straight and can’t function at all.  I’m thankful that today was a “good” day, even after the surgery.  But for Keith, I know the rough days are starting to wear on him and he’s ready to get back to life as normal.

Thank you all again for your prayers.  We are so thankful, and are seeing how God is working in this each step of the way.  Keith is totally at peace with how things are going, despite the pain that is hard to tolerate at times.  And I’m at peace too.  God is giving us patience, and showing us that, when it comes down to it, EVERYTHING else in life can wait.  I believe that soon enough, Keith will be back to good health, and we’ll be off and running again, but this time with a renewed sense of God’s presence in our lives.  Yes, He has our attention now, that’s for sure!

Thank you again; I just can’t say it enough!  It is humbling, and has brought many tears when we think of and talk about all the people who are praying on our behalf.  We’re so very grateful.

And that update would be the last one before Keith was admitted to the hospital. He rapidly declined over the weekend, was unable to get out of bed, and began coughing up large amounts of blood on Sunday, March 20th.

As we would later learn, the diagnosis of Wegener's can often take a very long time. Keith's symptoms lined up well with the disease long before his diagnosis. My next post will begin with the start of his 6 week hospital stay as doctors tried to get the disease under control.

Sunday, May 8, 2016

Happy Mother's Day 2016

For many months after we bought the ranch in 2005, I would find coffee cups
all over the property - in every barn and outbuilding, tucked away in the tall grass
in the corner of a pasture, sitting on top of a fence post.
I just didn't understand...maybe because I wasn't a coffee drinker.

When we moved here, we had 2 young boys and 10 cows,
and I didn't think life could get any busier.
I also couldn't figure out how anyone could leave so many coffee cups behind.
Now we have 3 older boys and pastures full of cows.
And I wonder how anyone could possibly remember where they leave their coffee cup?

The life of a mama is a blessed one.
Just about the time you think your plate is full, a little more gets heaped on,
and God proves to you that yes indeed, you can handle it.
Or more like it...He can handle it.
And along the way, you gain strength you didn't think you had,
and a whole lot of humility.

Yesterday morning I was out looking at calves and realized later I had left
my coffee cup behind - sitting on top of a fence post.
I just smiled as I thought back on all those coffee cups left behind years ago.

I realize now that I've added a new list of displaced items to the ranch.
Work gloves, gardening tools, and now coffee cups, too.
If someone new were to move in tomorrow, they'd surely think the woman who
lived here before had lost her mind.
Isn't it funny how life works?

Happy Mother's Day to all the mamas out there. 
We may lose things along the way,
but all we gain by being "mom" is worth it. :)