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