Boston

I think I'll go to Boston,
I think I'll start a new life,
I think I'll start it over, where no one knows my name,
I'll get out of California, I'm tired of the weather.
And I think I'll go to Boston
I think that I'm just tired
I think I need a new town, to leave this all behind,
I think I need a sunrise, I'm tired of the sunset,
I hear it's nice in the Summer, some snow would be nice.
I think I'll go to Boston

Heard this song? It's one of my new favorites. It's mellow and explains how we all feel sometimes - a change of scenery, a new life, tired of the sunset, tired of the every day struggles . . . . . tracking with me? Most of all, I like that the destination is Boston. Boston will always be home to me.

On April 15th, I came home from work, walked in the door, and Mike's words were, "There's been a bombing in Boston." What went through my head in a short amount of time was fear at a very high level. Family . . . friends . . . . where and how were they? I couldn't reach anyone. In a moment of desperation, my fear turned to anger. Relief was eventual when I heard from everyone. What followed, however, has been a struggle since. I have watched news around the world . . . .politics, natural disasters, statistics of suicide, Middle East uproar, Sandy Hook . . . . . Boston was the "icing on the cake" and the catalyst for my fear, sadness and thoughts to skyrocket. I have always battled my overactive imagination and have to challenge myself to think about things that are true, valid and real. But Boston's events were ones that were too close to my family, and I was running my own first half marathon in the following two weeks. There have been days since that I've sat in my car and cried, asking the Lord how long until the suffering ends and wondering how much more some can take. My heart hurts from sadness and my head hurts from the things I conjure up that "could" happen. I'll spare you the details of those thoughts. It ain't been pretty! What I want to share is the goodness amongst all of it.

Mom, my sister and I went on a cruise last week. Ironically, we left from Boston. I had a whole week with Boston people. People dropping their "R"s, cheering for the Bruins, saying "wicked" about nothing wicked at all, and living Boston strong. It was home for me. Time with my mom and sister . . . just what my weary, overworked head and heart needed. The week was glorious. Sunshine, food, love, rest . . . . glorious. I sat on our balcony one day and asked the Lord for a dolphin - vet's daughter, what can I say. When I tell you that 2 seconds later there appeared a baby dolphin in clear view of our balcony, it is no exaggeration. There he was - flipping and turning and having a great time - no fear, no sadness, no concern for life - pure joy from this little guy. It was awesome. The next day I upped the ante and asked for a whale. Guess what appeared that afternoon? Now some of you are reading this a little concerned that I'm a tad bit crazy crying in my car and asking for marine sightings, but here is how sweet this picture is. The Lord granted my requests for something He knew would bring great joy to me. The dolphin spinning and playing and having a good time was a picture to me of how I should be living, knowing that the Lord loves me enough to grant the simple requests. The One who orchestrates the dolphins is the same One who orchestrates my life and the lives of others around me. Life will never get easier. I know that. But the reminder from the Lord to me on the cruise, was that He cares enough to grant me the little things and more importantly, He is in the big things. Those animals were the words in my heart "I hear you, I love you and I'm sweet enough to give you a tangible request at a time you need it." (Those were the Lord's words, not the animals - you were really starting to worry about me!). I'd love to tell you that in all Mike and I have walked through, my faith is strong, solid, unshakeable . . . . but I still need the reminders of the oceans and the tangible picture of love and security sometimes. I'm a work in progress, friends.

Mike's extended stay in the hospital and extensive testing yielded few results or direction. He has decided to start the oral chemo this summer, and we'll see what God does. We'd love your prayers through this. It won't be an easy medicine to take with multiple side effects, and the question of what to do if this doesn't work are a battle. But I'll remind myself of the joy in that little ocean gift, the reminder that God's got us.

Worn

Dr: “It’s time to stop testing for a diagnosis and passing you along to specialists and time to get an idea of what you have and treat your pain and symptoms accordingly.”

Durk: “Can you come to all my doctors’ appointments with me?!”

Here was the conversation as Mike talked with the new infectious disease doctor this afternoon. Last I left you, the plan was to get some bloodwork done and start an oral chemo, operating under the idea Mike had a rare endocrine autoimmune disease. When bloodwork came back and new symptoms became cyclic (swelling, joint pain and stiffness, high fevers up to 104), Mike was referred to an infectious disease doctor. The doctor is admitting Mike for observation of the high fevers and to run oodles of tests, bloodwork and scans. The infectious disease doctor’s gut is that Mike does not have any type of infection but wants a battery of test results in one place to which specialists can refer. Additionally, he wants to rule out infection if possible, to move forward with other treatment. He also will arrange for Mike to be seen by a rheumatologist in the hospital. The doctor he has in mind is one that will see Mike and not dismiss his case, overwhelmed by Mike’s significant and complex 4 year health history. Ummm, been there, done that. Doctors are happy to push Mike along when he doesn’t fit on the box; this rheumatologist has a reputation of being aggressive in finding a diagnosis, and if none surface, aggressively treating symptoms. Mike will also be seen by endocrinology, the only body system that has shown consistent abnormalities. Mike and I felt good about today. We felt like we were in a holding pattern for quite a while, we were growing discouraged, and today rejuvenated some of our “fight.” Just in the nick of time. Here is a song by Tenth Avenue North that has been playing frequently in my heart and head.

 “Worn”
I'm tired, I'm worn
My heart is heavy
From the work it takes
To keep on breathing
I've made mistakes
I've let my hope fail
My soul feels crushed
By the weight of this world
And I know that You can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That You can mend a heart that's frail and torn

I wanna know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn
‘Cause I'm worn

I know I need
To lift my eyes up
But I'm too weak
Life just won't let up
And I know that You can give me rest
So I cry out with all that I have left

The phrase that I LOVE and has been my heart’s cry on more than one issue in life lately: “Let me see redemption win. Let me know the struggle ends.” I’ve been holding onto the idea that redemption wins. Maybe some of you need that reminder too. Know that as we walk this, we pray for so many of you. Spring is coming!

There is always something to be thankful for

Webster defines being thankful as being “conscious of benefit received”. Isn’t it true that sometimes we need to be intentionally conscious of the benefits we’ve received? Isn’t it true that amidst a complication with our kids, trouble with our spouse, hard times at work, even when we watch the news, that we need to be conscious of our benefits (blessings)? Admittedly, I just wrote to someone this week telling them that no one truly knows or understands the hell that Mike and I have walked through over the last 3 plus years. But as quickly as that comes from my mouth, so should my giving of thanks. I have been challenged to be more conscious of what I have. I’ve seen the trend on Facebook to dedicate November to a daily giving of thanks. I didn’t jump on that train, but I should have. What a better way to be more positive and appreciative of what I have in life, than to be intentionally conscious of the benefits I’ve received. So here goes; 22 things Mike and I are thankful for:

1. our house (We have no right to own this house with all the financial strain over the years; It’s God’s provision that has allowed us to keep our home)

2. friends who have continued to do life with us, despite our consistent need to back out of plans due to the illness. Shout out to Jill and Kent Schellhause who continue to serve, love and support us.

3. our dogs – They fill me with joy. It is so nice to walk in and be greeted by two sweet spirits. They are great company for Mike throughout the days he is alone.

4. Mike is very thankful for me (his addition, not mine)

5. Blessings in the mail. Seriously, there have been days we have been SO down, and the Lord has continually blessed us through the mail. A friend, a family member, someone we don’t know, sends encouragement. It’s enough to bring me to tears every time.

6. I am personally thankful for my trainer. She encourages me to push harder, and in life’s current struggles, I need to be encouraged to push harder, to endure. She also provides tremendous comic and stress relief. Thanks, Swig!

7. The Voice – this show is date night for Mike and me – a fire, some chocolate, and 2 hours of singing. We currently have a bet going as to the finals. I’m losing. Ahem

8. Sleep – We’re not parents, but every wink of sleep that is uninterrupted by seizures, vomiting, passing out, trouble breathing, overactive thoughts – it is blissful, just blissful.

9. Speaking of seizures – WELL OVER A YEAR OF BEING SEIZURE FREE!

10. My principal – admin can make or break your workplace, and my principal has always told me “family first”. He has stuck to that the last 4 yrs I have worked with him. He continues to ask, “How’s Mike?”, and I know he means it every time. Thanks, Rob.

11. Health insurance – enough said

12. A new church we are really enjoying. It’s nice to go and receive week after week.

13. Living in a free country – I’m never reminded more of this than at the time of an election and Veterans’ Day

14. Changing seasons – Mike and I love the changing seasons. We love the color of the leaves, the smell of our freshly cut tree, the new growth and warm weather of spring – love the seasons.

15. Chocolate – for me, Dove; for Mike, Snickers peanut butter (had to make the list)

16. Music – there are few things that speak so deeply to me – Music has the power to alter my mood. True story. Good thing I’m picky about what I listen to!

17. A marriage that has sustained some serious lows in life. We had no idea what we were committing to when we said “for better for worse; in sickness, in health”

18. Every breath – each one is a gift

19. I am personally thankful for a husband who continues to fight the good fight. I highly doubt I would have kept my sense of humor or my desire to live after such a long battle with illness.

20. Family – how do I begin to put into words how thankful I am for family? We will NEVER take for granted the continued love and support of family. I am well aware we are blessed.

21. The legacy left by Mike’s grandmother. She passed a few weeks ago. Mike was able to spend the last days with her, and he conducted a beautiful ceremony in celebration of her life. She was a wild spirit who shared my affinity for red hair. She loved her family so very much. She will be missed greatly.

22. I posted this on FB on the eve of the election, and I think it’s a good way to end this post: “In thinking about tomorrow, and all the fears and concerns that so many hold, the thought that came to me today was, regardless of what happens, I know who's king of kings and president of presidents ... And perhaps the most comforting is that I know, no matter what happens tomorrow, the one Who's really in charge has got my back, holds my life and predestines my steps. The last 3 yrs+ have taught me that again and again.”

Happy turkey day, friends. We’re very thankful for you.

goodness

Truth be told, I’ve been writing this and coming back to it for a little over a week. I’m not sure the reason I’m struggling to write, but pardon my disjointed thoughts. Not much has happened medically since I last updated. Mike and I had colds 7 weeks ago, and what you and I can fight in a week, Mike’s body takes weeks longer. He was put on antibiotics for pneumonia (although we don’t think he had that) and has just recovered. He has not been able to start the new medication as of yet, because he has to be in optimal health to begin. The medication will wipe out what little immune system he has, and he needs to start when he is as “healthy” as possible. While the cold/virus subsided last week, the headaches have intensified. The start of spring and fall are typically triggers for more intense headaches for Mike. He loses sight out of his left eye, does not drive, and he is only out of pain when he is asleep. He tries hard to stay awake, despite the pain, to keep his sleep schedule in tact. I have to tell you there are many things that have broken my heart as a wife watching her husband persevere through this, but the return of the intense headaches means the return of emotional and physical agony. Perhaps you think agony is a strong word, but to hear Mike sob through the pain at night . . . . there is agony in my heart on an emotional level, and physical agony for Mike. When Mike is healthy enough, his blood will be tested again, and he will start the new med. Would you pray fervently that he stays healthy, his bloodwork is fine, and that this new medical endeavor would bring healing?

 I was driving this past weekend and thinking about life. The truth is, I have been given much that others don't have and on the other hand, what Mike and I have lost in the last few years, few can identify with us. Thoughts of blessing and loss typically lead me to Justice. That dog loved to go for rides and enjoyed life with us. His care for Mike and loyalty to me were practically implausible . . . and before you know it, there were tears. I did love that dog! When I came home that afternoon, Mike started talking about Justice as well and the timing of his loss. When Justice died, I was mad. It was one more thing I had lost; one more thing God had taken. Let’s not forget he was diagnosed with cancer on Christmas Eve and gone 4 days later. As the months have passed and my emotions have been challenged, truth is where I find myself. The truth is that there is goodness. Because the Lord is good and loves us more than we can comprehend, there is goodness in circumstances that seem awful. You see, Justice made the decision to go. I didn't have to make that hard call. Justice went when we were with my parents, and my dad was the one to put him down. I wanted no one else to do that. Justice went in dad's care, and that is what I wanted. He also had a great Christmas and subsequent days, and I had hope that there was treatment on the horizon. Dad and I had talked on Christmas Eve about meds that may help Justice. This birthed tremendous hope in me, and Christmas was joyful. My immediate reaction to Justice's death was anger, because I had put aside truth. Yes, Justice went quickly, but dad was there and I didn't have to decide to put Justice down. Yes, I was given hope that we may be able to treat him, and then he passed days later, but Christmas was joyous. And the memories I am left with . . . . well, it’s easy to identify the goodness there.

 But what about the times there is no goodness? What about the times nothing good has come of a situation? Here is the challenge. Here has been my endless challenge in these past years. Where is the TRUTH? The truth is God is good, and if He authors life’s circumstances, there is goodness there, despite what we see. Think right now of life’s most complicated circumstance . . . can you see goodness?

 Would you pray for Mike’s pain to ease? Would you pray for the start of the new medication? Would you pray for his grandmother who is not well? And would you pray for us to see goodness in all things as a result of what we hold to be true? Bless you, friends.

back to reality

I know, I know; take me outback and tar and feather me. It's been a looong time since I have updated this, and I know you have been waiting with baited breath to know what the heck is going on with the Durkees! Rest assured I haven't forgotten you; I just lost track of time. Summer, you see, is blissful. I have been tutoring, reconnecting with friends, planning future times with friends, training and completing a sprint triathlon, vacationing at the beach, spending time with family . . . . ahhhhh, good old summer. Monday I have a teachers' inservice day and the kids come Wednesday. Yes, Wednesday. So it's back to reality and back to blogging and back to fighting this illness with a new direction. Mike has been weaned off of the Prednisone, the med that has been addressing his endocrine issues. Prednisone has a lot of side effects especially with long term use. As he weaned off of the Prednisone, he was put back on Cortef, a med he was on to address the endocrine issues. Unfortunately, Mike feels better on the Prednisone. He had an MRI of his pituitary (part of the endocrine system that sits in your brain) and since the surgery last summer, the pituitary has not grown or changed shape. This is a good thing. Mike's endocrine levels, however, are low. When switching to the Cortef, hormone levels decreased, headaches increased and in the last few weeks Mike has had 2 new symptoms - joint point in his whole body and significant swelling of the ankles. You'd think he were 8 months prego! I digress. At this point, doctors are in disagreement as to whether Mike has this autoimmune disease that is attacking his endocrine system. He has many of the symptoms and his primary dr in Cincinnati has talked with us about treating Mike with a med that often helps with this disease. Because there aren't many risks associated with this medication, we have decided to go ahead with it. Mike will have blood levels checked and then he will start this new chemo drug. This should be in the next week. We are cautiously hopeful this will help Mike feel better and put this disease in "remission" for lack of a better word. Our prayer requests are specific. 1)minimal side effects from the medication; 2) that it works. Thank you to all of you who continue to pray, believe, hope and fight with us. Your longsuffering means more to us than you know.

Sympathy Pains

So apparently, I have the need to feel Mike's pain in a VERY miniscule way. Mike had a funky lump removed from his chest, I had a growing mole removed from my face . . . both results normal. Mike has passed 4 stones at a time, I passed one yesterday. In a small way, I feel like these experiences keep me connected to the pain he feels and REMINDS me of the battle he fights every day. This has been my prayer - that my sympathy and empathy continue for Mike, that my mind remembers the daily pain he faces, that I would not lose sight of the compassion I had for him through the suffering when all this started years ago. Today, there is good news. Today, I am thankful for a strong man who is battling this far better than I could ever hope to. Don't forget us, friends. Don't forget to give thanks for released stones and negative biopsies! Please pray for Mike as he is having a hard time healing from surgery and sees the surgeon tomorrow. This comes as no surprise as his body has a very poor ability to heal due to the endocrine issues. He follows up with the dr in Boston in May for more scans of the pituitary, possible sinus surgery and hopefully a direction for treatment. Love to you all!

under the knife . . . again

Tomorrow morning, Mike is undergoing a procedure to take out a lump in his chest that was found. We have no idea what it is or if it is related to what has been going on, but it will be removed and biopsied. The surgery is at Christ Hospital here in Cincy and should be a relatively easy procedure. If all goes well, Mike will be home tomorrow night. He does run the risk of not handling things well with his body's poor ability to heal, but we are hoping for the best tomorrow.

There is much to tell about the dr in Boston, but I will sum up the important stuff. My dad was able to go with Mike which made things easier as dad understands all that medical jargon. When mom and I go, we shake our heads and ask them to fix it! HA! The dr took his time with Mike and asked many questions and ordered tests and Mike's case interests him. Mike is returning to Boston in May to possibly have sinus surgery (clean up from this summer's brain surgery when they went through the nose) and MRI of the pituitary gland now that Mike has decreased his steroids as well as an MRI of his abdomen. The dr suggested an inflammatory disease in more parts of Mike's body than his endocrine system as Mike has pain in other places now. In any case, nothing clear cut, but someone who has taken an interest and seems knowledgeable. I will update again when the biopsy results are in. Please pray for the procedure and an easy recovery as well as good biopsy results. I'll let you know as soon as we know!

Onward and Upward

Just a quick update for you. Tomorrow I am headed on a week trip with my mom and sister. We are going to warm climates where beaches abound. I can't tell you how thankful I am for family who make this happen for me and have loved on us in SO many ways through all this. Mike and I drive to NY where I get on a boat, and he gets on a bus. Mike will go to NH to be with my dad and NH friends for the week. He is also seeing a new endocrinologist in Boston. This dr was rated in the top 1% by US News and Word Report for knowledge of and treatment of pituitary diseases. He just started to see patients, and Mike will see him next Friday. Would you pray for this appointment, please? Thank you friends! See you in a week or so!
Becka

ch-ch-ch-changes

Well it's been entirely too long, but haven't known what to tell you. Mike's trip to John's Hopkins hasn't led to any life-changing news for us. He's had several blood draws over the last couple months and his levels are all over the place again. He is on a blood sugar med to help his body regulate his numbers as that seems to be the latest organ affected. His hormone levels indicate a growth hormone that is off the charts high. The answer from John's Hopkins? Let's retest in 6 months. His last blood draw indicated a pituitary tumor . . . . ummm, been down that road - wasn't there. Mike's current endocrinologist has told him she does not know where to go with him and referred him to a rheumatologist for inflammation, thinking the pituitary swelling is the issue. Mike's on a new med for this - not helping. Mike's prednisone levels have also been dropped as the doctor at John's Hopkins wants Mike's levels dropped to retest him for the rare autoimmune endocrine disease that is suspected by doctors in Cincinnati. Unfortunately, a drop in prednisone, the only thing that keeps Mike's endocrine system working, means increased pain which leads to vomiting and passing out and increased pain meds. The last few weeks have been exhausting. Mike is in a lot of pain, up most of the night, vomits frequently, and he is now passing out from pain. This leads to a loss of freedom - no stairs, stove, knives, walking with glass, driving . . . and more sedentary so as not to fall. If I could tell you the stress this has induced on both of us . . . the toll it's taken on us personally and in marriage. It feels like so many steps backwards. We both feel like if there isn't a "plan", there is no movement toward answers or progress or better quality of life. When Mike's endocrinologist gave up on him, he researched other reputable endocrinologists and found one ranked number one in the country with one of the specialties being pituitary diseases. This dr just started seeing patients, and Mike has secured an appointment in three weeks in Boston. You'll remember my parents live up there and he will stay with them and dad will be on Boston run duty. Perhaps a highly ranked endo and the best vet I know, can figure Mike out! We are thankful Mike got the appointment, and beyond that, we will take what comes. One more thing - Mike has an appointment mid April to have a lump removed from his chest - something that was found months ago. Surgery can be risky due to the endocrine issues, but the lump has to be removed. How can you pray??
Pray for the surgery in April and the results of the biopsy
Pray for Mike to get a break in headaches and vomiting and passing out.
Pray for our marriage to endure through all life throws at us.
Pray for SLEEP! We're both exhausted.
Pray for the appointment with the new endocrinologist in Boston.

Sorry it's been so long, friends. Love to you all for not giving up on us.
Becka

delay (1/13/12)

It's been a while - haven't known what to write because I don't know where we are or where we go or if life ever stops hurting. I feel bombarded by hurt - like every time I turn around there it is again, like an old acquaintance I should be so used to, but hate to see again -and can't emotionally deal with it every time it comes around. sigh . . .what to tell you . . . .Mike went to MD. Cincinnati drs gave us real hope that a diagnosis might be in sight. They talked of a case just like Mike's many yrs ago and a guru of the disease and this dr was talking with the Cincy drs and was very interested in Mike's case. So Mike went. Mike did not see the "guru" as he only does research, but Mike saw his associate, and he was told "you're one of the most complicated cases we've ever seen". We're aware - but thanks for the memo (little sarcasm there). It came down to funky unexplainable bloodwork, no real answer for headaches - just things to try, a reduction of prednisone and no diagnosis. Mike was tested for the rare disease, but was told his prednisone was likely throwing the numbers off and a decrease was necessary to retest. The dr was concerned about the high level Mike was on, but with a decrease in prednisone comes the reality of Mike's body's inability to keep him healthy - kidney stones, high fevers, raging headaches, abscesses, sleepless nights due to headaches and vomiting and passing out and a general beat up feeling are what Mike has been dealing with since the decrease in prednisone. Mike said to me last week, "I wish He'd either take me or heal me." My response was that no one would blame him for feeling that way - sometimes that's how I need to respond - not "cheer up" or "this'll be figured out", or "tomorrow will be better" - but I can totally understand why he would feel that way.

And what about me . . . . here's what I just don't get right now. I've battled with the Lord many times through all this, and this is my current and strongest battle- why the false hope???? Why the seemingly open doors and possible answers and things that have appeared to us, granted in our own human minds, to be gifts and God ordained appointments, only to be disappointed again and again and again. I'm just being real here, friends. Is it so we "keep the faith"? Is it so we know He's real? Is it so we learn some lesson we are just too hard headed to see?

So perhaps this is what life is - me working to support my family and carry insurance - Mike being on disability and being sick for the rest of his life - us fulfilling a caretaker/patient role for the rest of our married lives - at 32 and 35, that looks pretty grim, but perhaps it's reality. We've held out hope that something somewhere would come about - but when do you stop hoping and start accepting that this is life? When does this unknown illness become more serious and what would we even do about it and will it ever? I totally hear creation groaning sometimes and it's hard to rise above.

I will end with this. Two weeks ago, the Wednesday after Christmas, we lost our sweet Shepherd. I can hear some of you, " It's a dog, get over it". Allow me some perspective sharing here. When I moved to Cincinnati, I knew no one, had no job, was home by myself a lot as Mike was working. Justice was my company. He followed me, he walked with me, he ate with me, he watched me, he took charge of me. There wasn't a day that went by that I didn't question that dog would give his life for me in a minute. Shepherd loyalty is unbelievable. When Mike was seizing, and I was at work, Justice stayed by Mike's side to lick him when he woke up so Mike would know someone was there with him. When Mike was seizing hard, Justice would put his head on Mike's legs in an attempt to get them to stop shaking. When Mike and I had had our fill of life and we would sit and cry, Justice would sit with us. When we went to bed, me in our room and Mike in the chair so as not to keep me up with seizing, Justice would lie equidistantly between us, to ensure he could watch us both. You may also remember that I talked about losing yet another thing in life and how much that would hurt and how I didn't know if I could handle it . . . .Justice was family, friend, caretaker and protector all in one. It hurts every day he's gone, every day I walk in the door and he's not there, delighted to see me. My enlightenment in thinking about his life has been this. Justice's character reminds me that God is our Shepherd, and perhaps, in all those times Justice was there, God was too, and I needed a tangible presence.

And he's off!

That's right, after the annual Durkee Christmas party this evening, Mike is headed to the train station for his week long trip to Johns Hopkins. My mom will meet him there tomorrow and then the tests and appointments begin. We have hope for this trip and wait to see what God will do. This week has been a bit trying as Justice had some issues, Mike's head has been bad, the little dog was vomiting, the pharmacies did not have prescriptions, the furnace went out and the water pump on our truck is going and needs to be replaced. BUT, here's the cool thing. Before the dogs had their issues, before the furnace went out and before we got word on the truck, God provided. I read this in someone's blog this week "Through all of these events I am reminded just how faithful God is and how many tiny things (and huge things) seem to fit together at just the right time to keep us buoyed, encouraged, and aware of our blessings." Mike's trip is paid for, the furnace repair is paid for and the money for the truck came in the mail in various forms before I found out about it. God truly buoyed our financial needs with the means to pay them all. He has continually provided for us throughout this time. There has NEVER been one bill I haven't been able to pay. THAT is amazing!

Mike and I have been on the receiving end of so much giving, that we wanted to pay forward in a small way this season. We hosted a Christmas party and on the invitation told our friends of a family that we had "adopted" this Christmas. It is a mom with 7 kids who needed help fulfilling Santa's role. I was astonished at the amount of giving that walked through the door tonight at the party. We drank hot chocolate, had a fire, listened to Christmas music and talked in the most of wrapping MANY presents for this family. It is so sweet to be able to pay forward (with a lot of help) the kindness bestowed on us.

This Christmas, take a minute to look where you can pay it forward or help someone in any number of ways. I can tell you from someone who has been on the receiving end, the blessing is rich and one of the only things that has kept my heart and head in this thing called life. Your giving is a reminder that God hasn't forgotten us. Consider that the Saviour of the world gave up His throne long ago to be found in a manger and save us. Pay forward His kindness to you as He continues to give to us. A very Merry Christmas, friends. God's richest and most wonderful blessings on all of you and your families!

much to tell

Oh boy, it's been a while since I've updated this. So sorry! Let's start with Thanksgiving. Thanksgiving was a day of mixed emotion for me. I have a very sick Shepherd whom I was afraid I was going to lose around Thanksgiving as he just wasn't responding to treatment and declining rapidly. Mike and I made the decision that I would stay home with Justice and Mike would go to Cleveland to be with his family and celebrate Christmas with them. This was our first holiday apart and we were sad to be apart but felt we made the right decision. To some, Justice is just a dog. To me, a vet's daughter, the dogs are a part of our family. Not to mention the fact that life has been hard for so long, that to lose Justice now, I would be heartbroken. I'm happy to report, he has made a nice turnaround and is doing better! That does my heart well! Another thing that did my heart well was the opportunity to talk with another wife whose spouse is ill with cancer. Despite different illnesses, I identified with this girl in her feelings so much. She is the first one I have been able to talk with since all of Mike's health issues that I really felt knew how I felt - there was so much comfort in that. I think the comfort came from knowing I wasn't alone. I have felt so very lonely in so much of this, that to have someone identify with my feelings was a blessing I wasn't expecting on turkey day, and certainly something to be very thankful for. While I am talking about this sweet couple, here is the link to their blog:

http://www.caringbridge.org/visit/zachschellhause

Would you please pray for them? And while I'm on the subject, a friend of mine from school, his wife, has also been diagnosed with very aggressive cancer. Here is her blog:

http://erin-fightingbreastcancer.blogspot.com/

Would you please pray for Erin and her family? Life is so hard on so many levels, sometimes!
Before Thanksgiving, Mike was in the hospital, admitted by the new headache specialist he is seeing, to try a new treatment and manage the headache pain. Mike did have some relief and was sent home on a decreasing dose of new steroids. We were encouraged by some relief after trying so many medications, but discouragement came when Mike was home and with each decrease of dosage came increased pain. He's back to vomiting nightly and living in 24/7 pain. His vision in his left eye is also quite poor. Not to worry, friends, there is a silver lining of hope here. In the hospital, a dr (we're not sure which) mentioned a case like Mike's years ago and the resulting diagnosis. Mike fits the profile to a "T". The condition is very rare (like 500 cases in the US and 1 out of 10 are men). We always knew this would most likely be rare as so many of the tests Mike has had were normal. We have a next step. There is a dr at Johns Hopkins, in Maryland, that is the guru of this autoimmune endocrine disease. We have been connected with him, he's very interested in Mike's case, and next weekend, Mike will travel to Maryland for a week to see this dr. To be clear, it looks like this might be a diagnosis, but nothing is for sure yet. Once we have that information, hopefully after the Johns Hopkins visit, we will share more information with you. My mom, God bless her, will travel to the hospital with Mike as he will be there for a week. Until Mike's appt, would you please pray for a break in the headaches this week? It would be nice to do a few Christmasy things before he leaves. Onward and upward, friends! I pray, despite the hurt in life, you are comforted in knowing that Christ identifies with our hurt and walked through his own pain in life, starting with a humble birth in a manger. Let's not lose sight of this in the busyness of the season, but also, the pain of life.
Becka

giving of thanks

My good friend has inspired me with her 30 days of Thanksgiving, and because I have but a week until turkey day, I thought I might conquer all 30 days right now. Here we go: 30: an unexpected date night last night; 29: Christmas shopping is done!; 28: a diagnosis for my sweet Shepherd as well as treatment; 27: changing leaves (Fall is my favorite season); 26: my family that redefines the word longsuffering; 25: a weekend with good college friends and lifelong friendships; 24: heat (brrr, it's cold out there!); 23: the first fire of the year!; 22: a job with guaranteed salary and health insurance; 21: 9 months SEIZURE FREE!!!; 20: many delicious meals from many of you; 19: a new headache dr that has put together the headaches and endocrine issues and has some ideas and next steps (more on that later); 18: a neighbor who helped Mike clear the leaves; 17: the holiday season (makes my heart happy); 16: recent adoptions by my friends (a cool picture of what God has done for us); 15: 2 working vehicles; 14: lots of love and prayers from so many for so long; 13: a new grief counselor that is covered by our insurance!; 12: faithfulness; 11: the deer in my neighborhood; 10: home sweet home and the ability to sustain it (only by God's grace); 9: down time in the busyness of life; 8: comfy pants (come on, you know you love them too!); 7: laughter; 6: forgiveness; 5: mercy; 4: grace; 3: love; 2: salvation; 1: life
This Thanksgiving, be thankful for all you have. If you are like us, you have been blessed beyond what some only dream of. Love to you and your families, friends. A very happy turkey day to you all!

back to UC

So last week, Wednesday, Mike went to the headache specialist and the dr took a look at Mike's recent MRI and called the ENT surgeon while Mike was still in the office. The headache specialist saw a sinus pocket that was filled and most likely causing the head pain. The ENT surgeon said he could fit Mike into surgery in 2 days instead of waiting another week when the surgery was scheduled. We made arrangements and then the hospital called and told Mike it was scheduled for Monday, tomorrow, and that he had to have tests done the next day (Thursday). On Friday, the doctor called and said the recent tests showed the sinus pockets had shrunk and the surgery was off but that Mike needed to go into the hospital for pain management and more tests. Did ya catch all that?
Friday night, I took Mike to University Hospital and it is likely he will be there until Tuesday. They are running antibody tests, doing an MRA, MRD and spinal tap (youch!). At this point, the endocrine team and headache dr are toying with a possible diagnosis but are doing more tests to rule other things out. 4 years ago the "guru" of this rare disease was at University Hospital, and if it turns out this is the answer, we will get his contact information and follow up with him.
I dare not get my hopes up that this is the answer, for I have learned it is easier to accept my low expectations than be disappointed by my false hopes. I know that sounds bad, but it doesn't hurt as much.
On a personal note, Mike and I have experienced so much loss over the course of this illness, and the culminating grief has affected us both more deeply than I think we can comprehend. This week we are scheduled to see a grief/marriage counselor to help us deal with all the emotions that come with this journey. We don't have family close and we are both dealing with very separate stress and loss. Job, finances, health, independence, 3 grandparents and an uncle have been lost in recent years and on some level, we have lost the support of each other as we are left to deal with our own very different emotions.
Please pray that this hospital stay is fruitful and our counselor can help us muddle through the past years' loss.
Love you all,
Becka

Reunion

Last weekend, Mike and I got away to the great state of PA. It was my 10 year college reunion. Wowsers, I am old! Mike and I delayed plans until we knew how he'd be, but we went with the understanding that if Mike wasn't doing well, we'd drive right back home. We drove to Columbus and picked up one of my girlfriends and then to PA to pick up another and off the four of us went to Messiah College! I jokingly told Mike it was like having sister wives - him and three women - not sure he appreciated my humor - not sure you will either, but thought I'd share cuz I think I'm funny!!! I digress. We had a great weekend. I connected with lifelong friends. When I say lifelong, that is truly what I mean. These people mean the world to me. I care so deeply about their struggles and rejoice greatly in their blessings. It's doing life together from a distance. They have done life with us. They have read, called, emailed, come over, blessed, given, prayed, loved, encouraged . . . done life . . . .walked through our pain. There's nothing more uplifting in all this than to know that others are doing life with you. It makes the journey bearable when at times we just want to be done with life. During the reunion, I had a moment on Saturday morning when I told Mike I wanted to go home. There was this intense cloud of depression to watch all my friends moving on in life and happiness in stark contrast to my life. Please DON'T read this the wrong way - I am overjoyed with my friends' blessings in life. I pray God's sweetest and best hand on their lives . . . . but reality hits when people are fixing their houses and moving and getting new jobs and bringing up sweet children and moving on in life and you can't see anything but just getting through the day, no plans for the future. I had my depressive thoughts, had a cry and a good hug, and that was that. It was done. I was free to revel in the reunion and all the joy it brought. At the end of the weekend, my insides ached from laughing the hardest I have in a while and we went home with a happiness in our hearts. Mike did great over the weekend. He only bowed out once to sleep. He was a trooper! I so appreciated that he stayed up when he didn't feel well and it did my heart well to see him enjoying himself with good friends. You see, my friends are so accepting. They don't just love and care for me - they love and pray God's best for Mike's life too. That is sweet. It was a great and needed time.

Mike update: Mike is scheduled to see the endocrinologist tomorrow. He'll get the results of some blood tests (hormone levels) and other tests. His headaches have been off the charts bad. He's been vomiting several times during the night. One night he vomited and then passed out which freaked me the heck out! I get up with him now when he vomits in case he passes out again. Durk goes down hard as you might imagine! He has an appointment Nov 1 with the headache specialist. We don't have high hopes for this appt. His appointment to have the nasal passage cleaned out and the growth on the back of his head are set - mid and late November. Mike's mom will be here for a couple days after the nasal surgery and then my mom will be here for a couple days so I can continue to work. We'd most appreciate prayer for sleep. The headaches interrupt Mike's sleep on so many levels and it hurts me so much to see him in pain and not be able to do a darn thing about it.
It's sweet doing life with you all,
Becka

October 6

Three years ago on this day, I never would have comprehended the pain life would hold for us. I would have laughed at you had you told me I would be a blogger, only to inform others of how rough life is for us and how much suffering it entails. You see, three years ago on this day, Mike was out fishing, and he fell. We thought nothing of it that night. But then he fell again and again and again, and pretty soon life was different and heart wrenching and at times, unbearable. Three years. It's hard to comprehend even now that's it's been that long. If I could begin to communicate the utter depths of despair we have been to. If I could tell you the unending physical pain Mike has been in. If I could tell you the assault this illness and lack of answers has had on our spiritual understanding. If I could tell you the relationships that have been severed and hurtful comments we've endured: we are being punished, Mike is possessed, Mike needs to be in a psych ward, we are bad friends for not being around. Oh friends, life has not given us a choice but to pull back, because there are days we barely hold on. There are months that we are just barely surviving. Life has been at a standstill for three years. We've watched friends move on in jobs and their families have expanded. We live day to day, hospital visit to hospital visit, pain management dose to pain management dose.
Mike was up last night, in tears. I'd love to tell you this is the first time I've seen the big guy lose it, but truth be told we've both had our sets of tears, both together and on our own. There were nights after he'd fall from a seizure that we would sit on the floor together and tears and emotions would come from places we never knew were so deeply hurting.
The season we now find ourselves in, is one of hopelessness. Mike woke up last night in severe pain and sobbingly said to me, "Go back to bed. I'm sorry I woke you up. This is my life now." In three years, Mike has never lost sight of my needs. He knows I've had to be strong and there has been a lot on me. He has always understood and empathized with me about the physical and emotional toll all this has taken on me. My only prayer is that I have been understanding and loving and caring and half the helpmate he has deserved throughout all this.
Mike's words were true last night - this is life. And the question we now ask ourselves is, is this life forever, or for a season? We've seen drs, we've been to hospitals across the country. We've followed differing medicine, therapy and diet routines. We even signed up for brain surgery which was our last hope, I feel, at a better life. Mike's body has definitely deteriorated since surgery. At this point, Mike is scheduled to have sinus surgery again to clean out the cysts that have grown post surgery as well as cartilage. He is also seeing the surgeon that removed his gall bladder to have some cysts removed off the back of his head. They have been steadily growing. Mike is testing his blood sugar regularly and has received some insulin. He is following a diabetic diet as he is at risk for developing this condition, tied to the endocrine system. He has been prescribed a post cancer med to balance the estrogen levels in his body. He sees the neurosurgeon in November, and I have no idea what good that will do. He is scheduled to see a headache specialist on November first. Mike's steroids and pain meds have been increased, and we are both discouraged by this.
My fervent prayer is that we can manage Mike's symptoms, if not find an answer and cure for him. Because if life remains like this, I honestly think, what is the point? . . . . And the answer to this will always be that God is still good. I know it's been three years, but please don't forget us, friends.
Love on your families tonight. Becka

Update

Mike's still in the hospital but may be home tomorrow. They have tried different treatments for the headaches saying to him, "You've tried all the things that work best for most patients". We're aware! There will be more tests tomorrow and Mike is still waiting to hear about a tumor test they did last week. He's had a couple units of insulin due to high blood sugar (this is new), but in the last 48 hours his blood sugar has been fine. They have him eating a diabetic diet and when I went grocery shopping tonight, I paid close attention to carbs. We don't need to throw diabetes into the mix! The doctors ruled out the heart infection and have told Mike he needs to have 2, maybe 3 more surgeries. One will be nasal surgery to clean out the cartilage and remove and biopsy the cysts that have grown post surgery. We knew about this one. The second is a cyst removal on the back of Mike's head. He has had several cysts growing on the back of his head that no dr has been concerned about, but this team thinks Mike should have it removed in case it is a source of hormones. Lastly, it is so unclear what the pituitary is doing - no tumor but not working well and spots that looked "abnormal" during surgery and a biopsy that showed evidence of inflammation. Should the neurosurgeon go back in and remove more of the pituitary? Will this alleviate pressure? Will it shed more light on what is wrong with the pituitary? Is this worth more brain surgery??
Just thought I'd update ya!

Over the river and through downtown, to University Hospital we go . . .

Mike has been to the ER twice in the last 5 days and spent all of Tuesday afternoon in the endocrinologist’s office. It seems his body is slowly but surely getting worse, endocrinically-speaking (I made that term up). Mike’s blood sugar is slowly creeping up and trips to the hospital have been for headaches so severe he is vomiting and hefty spikes in fevers. The neurosurgeon asked Mike to go to the ER last night fearful of meningitis, which Mike does not have (he’s had that test . . . shocking, I know). We are thankful he does not have this. During our trip to downtown UC last night, we met Dr. John. Now this is confession time. In April, when Mike had his gall bladder removed, I developed a slight “crush”, if you will, on Mike’s surgeon. He was the first doctor in a very long time that took Mike’s symptoms seriously, went after them aggressively and helped Mike to feel better (despite tests results that showed everything was fine – you’ll remember Mike’s gall bladder, upon removal, was very infected despite negative test results). I developed a slight “admiration” that day, and last night was “admiration” number two. This is boding fine for marriage, don’t you worry. Mike’s fully aware of my crushes for these doctors who are a breath of fresh air, who sit and listen, who think outside the box, and who are willing to put Mike’s quality of life concerns above impending appointments and ER-filled rooms. Tonight, Dr. John spent some amazing time taking through all of Mike’s three-year medical history, asking questions as we told our story. It was cathartic for someone to listen, truly listen. Turns out Dr. John is the chief of staff – imagine the chief of staff spending extensive time in an ER patient’s room and truly caring about them! At the end of the evening, Mike was admitted to rule out a possible heart infection. Yes, this is new. I will know more as the day progresses and will update you.
Bless you, longsuffering friends, who have not forgotten us in your own sufferings. We are eternally grateful.
Becka

confusion central

I don’t even know where to begin . . . . where did I leave you? . . . . we were waiting for results on Mike’s hypothalamus. The results came back “suspect”. What the heck does that mean??? I don’t even know. We have had so many opinions and so many potential diagnosis and haven’t a clue where to go from here. I’ll try to simplify all of it – wish me luck!

Mike continues to feel lousy and very tired – “zapped” is his word. His fevers have been over 104 and he was vomiting last week. His headaches remain bad. The endocrinologist has told us that we will not know if Mike has cancer of the pituitary until it metastasizes . . . . because Mike’s blood levels are WAY out of whack, his hypothalamus looks suspect and his recent MRI of the pituitary looks suspect, we are not really sure where to go from here. The steroids went back up (which is very disappointing to us as he’s been on such a high dose for 3 yrs) to compensate with the endocrine levels. We are still contemplating the testosterone injections as his testosterone level is off the charts low. The endocrinologist wants to push the steroids and has said the adrenals will never work again; the neurosurgeon has said that Mike’s adrenals will work again and all this may be post-surgery effect. Today the ENT surgeon said we should consider having another surgery to clean out cartilage and cysts that are forming in the sinuses post surgery. He told us that he has only had to “go back in” to do this surgery on one other patient – of course Mike falls in this category! Durkee! It would be one day, out patient, and no brain involved! Mike’s primary care ordered another panel of bloodwork to look at Mike’s endocrine levels. We are waiting for those results. Mike’s primary care also ordered a CT scan of his adrenal glands because they have stopped working (the guy should glow in the dark he’s been so radiated!). The PC is questioning a syndrome that is attacking his immune system (can’t remember the name and there is no definitive test for it). Mike’s blood sugar keeps increasing and this is another concern and another reason to question this syndrome.
I can’t even keep track of the number of opinions and dr appointments and tests and results and LACK of conclusions. Sigh . . . BIG sigh. We are debating about pursuing the NIH. The NIH takes hard to diagnose cases, but we have no idea if they will take Mike. He was rejected a couple years ago. Here is our plan: increase the steroids, wait for a month or so to see if Mike’s body recoups if this is all post surgery nonsense, pursue a headache specialist in that time if the headaches persist, consider having the second surgery in the sinuses and pray about the NIH. . . oh yes, and breathe.

On a personal note, I went to see my dear friend last week in the hospital to celebrate the birth of her new baby boy. I was thrilled to love on that baby and celebrate in their joy and saddened at the same time. Mike couldn’t come because he felt lousy, and that’s what bothers me most– I miss him, I miss us, I miss making plans to do fun things because we never know how he’ll feel.
We feel . . . .defeated, confused, stuck and tired of living life sick. We also feel loved, supported and thankful for God’s grace through all this.

Quick Update

Today we received the results of Mike's tests from last week. He and I talked last night about what we would do if once again, tests came back fine . . . . fortunately, or not, we didn't have to continue that conversation today. Mike's tests came back not so great. They showed signs of infection or possible cancer of the hypothalamus. He has to have another test to determine what is going on exactly with the hypothalamus. We are unsure of this timeline as of yet. Tests also confirmed that Mike's adrenals are not working at all. This means that the only substance his body is using is the steroids he is taking. Mike's adrenals have always been deficient, but now they are no longer working. Also off the charts is his testosterone level. Lack of testosterone makes Mike very tired and his nonworking adrenals make him all the more tired as well as feeling overall lousy - like he has the flu. He has trouble sleeping and his headaches have been intense lately. Here is how you can pray (as we are so very thankful you do):
1) pray that the steroids and testosterone work so Mike does not have to go on daily injections.
2) pray that Mike feels better and sleeps better :(:(
3) pray for the results of the upcoming tests that they may shed light on what is going on with his body.
4) pray that we continue to learn what God would have us glean from this long journey.

Blessings to you all,
Becka