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.