one down . . . one to go?

For those of you who haven't heard, surgery went well Thursday, and Mike is home recovering. I will return to work Monday, and my mom is here until Thursday as there is testing this week and I cannot miss this at work. Mike was kept overnight at the hospital due to the adrenal issues, but he had no complications! Surgery went well. We are big fans of West Chester Medical Center and Dr. Fischer! He listened - a dr who finally listened to us and then took action. Mike has felt lousy for 7 weeks, and every test looked fine, and so no one believed he felt lousy. Unfortunately, due to the steroids to address adrenal issues, his bloodwork and tests can often come back looking far better than they are. And this dr knew that, and knew that the gall bladder needed to come out despite the good bloodwork, and took action. He was a breath of fresh air! Mike's gall bladder did indeed look bad and infected and had evidence of past infections. Dr. Fischer thinks this will make a big difference in how Mike feels. He should feel 80-100% in 3 weeks! He is feeling sore and has little appetite, but this is to be expected. All in all, this was a good and blessing-filled experience for us. Good doctor, good care, good results, and quick answers and action. There were so many things that day that were clearly the Lord's blessings and hand upon us, it was wonderful - and a long time since we've felt that in the medical field. The same day we saw Dr. Fischer, we saw a new endocrinologist that we really liked. We received orders for new tests and a referral to a pituitary surgeon. Mike will make an appointment for this Monday. I asked Dr. Fischer when Mike could have the surgery on the pituitary, IF that is what is determined, and he said 6 weeks. It is not for sure they will deem this a necessary surgery, but deep down we hope they will as this MAY be the answer to some/all of the endocrine issues. In the meantime, however, we will continue to enjoy over 50 days seizure free :):), healing from the gall bladder and hope that Mike will feel better, and follow up with the new endocrinologist who also seems to listen and be a go-getter.
We are thankful for your prayers and calls and blessings and love, friends.
Becka

Surgery . . . but not what you think, perhaps

Soooo, after long weeks of nothing - no results, no progress, no doctors who seemed to listen, today we have made progress. We fought long and hard to get someone to see Mike re: the pituitary tumor and flu-like symptoms he's had for 6 WEEKS! We begged doctors, showed up at ERs, did all that we could to get someone to listen to the fact Mike felt awful! We finally got four appointments this week and things are happening. First, after the wrong MRI was given last week to check the growth of the pit tumor, Mike was able to schedule another on Friday, without having to go to the ER (thankfully - I hate that place!). He won't, however, be able to go, because he is having surgery Thursday morning. We spent the day in the ER Monday as Mike was up all night in pain. He has had ongoing pain in his side with various other symptoms and after a scan on Monday, his gall bladder showed signs of needing to take the next step - see a surgeon. The surgeon we saw today gave us a 60-70% chance that removal will help Mike feel better. He is very experienced and came highly recommended, so we scheduled the surgery for Thursday morning. We are praying and are HOPEFUL that this removal will indeed take away the pain, GI issues, continual fever, etc. If it doesn't, we will be crushed - pain meds are not helping Mike at this point. Mike is also seeing an infectious disease doctor tomorrow - he fit us in and we are covering all our bases. Additionally, we saw a new endocrinologist. We really liked her. She was thorough and has already referred Mike to a neurosurgeon re: the pit tumor and did say the headaches COULD be related to the tumor. She was concerned about the growth. She also ordered tests that have been run before, but we were happy she was doing her own thorough work-up and not going on others' notes. She also ordered another test to check growth hormones as Mike's hands and feet have grown - weird! Mike will see the neurosurgeon when he can, get the lab work done as ordered, reschedule the MRI of the pituitary, and see the endocrinologist in a month unless bloodwork looks concerning. The endocrinologist is also reducing the amount of steroids Mike is on; her reasoning is that his dose is high and it could be causing him to feel lousy.

Today was a breath of fresh air - we felt like drs listened, gave good advice based on test results that finally showed something and there is action. Time will tell what this action will lead to. It would be awesome if Mike felt better after this surgery and we started to get some answers about the endocrine system. My mom is coming into town tomorrow (I LOVE my mom) as I am nervous there will be adverse effects to the surgery and would feel better if there were someone else in the house the night he comes home. Most patients go home the next day as this is a relatively easy surgery, but with the adrenal insufficiency, they MAY keep Mike. Surgery is a little more risky for Mike as his body can't fight stress on its own, and surgery is stressful. He will be given an extra dose of the steroids pre-op to help his body cope.
Keep praying for us, friends. We'll keep you updated Thursday.
Becka

Update

Super tired, so not sure how cohesive this will be, but I know an update is in order, and there are ways you can pray for us and ways you can praise with us. Let's start with the praises, shall we? Sunday, Mike took some old records to a music show and our hope was $500 as this is what is left for our out of pocket expenses for him, and I have yet to receive the bill from last hospital stay. I have no doubt that bill will fulfill the last out of pocket we will owe. We were disappointed when we walked out with $350, but it was $350 that we didn't have. Sunday night, some of our dear Young Life "kids" we worked with in NH, gave us $500. How sweet is God? We needed $500 and ended up with $850! Additionally, another month's mortgage was provided for us. I've said it before, but I must say it again, IT IS BY GOD'S GRACE WE STILL HAVE OUR HOUSE. You know what else has astounded us? Those who have "little" - who work hard and have to watch every penny - have given the most. It's amazing to us the huge amount of giving some have truly sacrificed (and we are well aware it has been a sacrifice) to encourage our hearts and allow us to keep our house. I cry every time I think about our friends giving on our behalf, and what they have given up for us - it's overwhelming. How do we begin to thank you??? Mike remains seizure free. YES!!!! SEIZURE FREE!!!!!! He is off one seizure med and has started to wean off another just today. It is with a grateful heart that I type these words, but I am cautiously optimistic as Mike has gone over 90 days, and we are not close to that. I have lived for so long waiting for the other shoe to drop, I must live cautiously optimistic - it's too hard to get my hopes up and have them crushed - just being honest. This weekend we also had friends "rent" space in our garage. This is a praise, because our flexible spending account for medical expenses is tapped out, and we don't have prescriptions or copays budgeted for. The "rented" space will help us pay for these monthly expenses. I'd love to stop here, b/c we have so much to be thankful for - so much to praise Him for . . . . there are ways you can pray for us as well, however.

Praises and Prayers:

Since Mike was in the hospital four weeks ago, his temperature has been over 102 degrees daily (with breaks in the fever here and there) and he has continued to feel weak, have no energy, have intense headaches, have GI issues and just generally feel awful. He went back to the hospital last week as he woke with a horrible headache and loss of sight in the left eye. His endocrinologist ordered an emergency MRI of the pituitary tumor (as the pituitary sits behind the eyes) to make sure it wasn't bleeding. After spending ALL day in the ER waiting for the MRI, Mike was given the wrong MRI - yep, no pituitary MRI - general brain MRI. The ER dr came in and said, "Good news, your brain looks clear!" Ummmm, excuse me? The pituitary looks good? No tumor? He answered with a resounding "YES!". Mike and I drove home dumbfounded and a call to the endocrinologist confirmed the next day that the MRI was not of the pituitary. Guess who's having another MRI next Friday of the pituitary? AHHHHHH! Mike specifically asked if the MRI was of the pituitary when he went down for the test. He was assured it was. Incompetence!!! From the results of NEXT Friday's test, the decision will be made as to whether Mike will see a neurosurgeon. Mike has also been referred by his primary care and endocrinologist to see an infectious disease dr. He sees this dr Wednesday. We are also waiting to hear from the NIH as to whether they will take him. We are unimpressed with the endocrine care Mike is receiving, and we are seeking another opinion if the NIH does not take him. Prayers are appreciated that we might find someone who will get to the bottom of the endocrine issues. Phew! I think that's all!
Sleep well tonight, friends. Know the Durkees love you and are thankful for ALL you do to love on us.

Waves

Life comes in waves - good times roll onto the shores of life and bad times follow, and the tides of life recede the bad times and good times roll back . . . . . over and over again the tides change and the waves crash on the shore or lap quietly.
We have experienced many waves this year and a half - hospitalizations, no diagnosis, diagnosis but no cure, treatments that don't work, seizure free periods, closeness of marriage, rough times in marriage, good doctors, not so good doctors, friends loving and caring for us, people who have said hurtful things to us throughout all this, God's provision, worry, peace . . . . where do you even begin to digest all that happened, all the waves that have come our way . . . I'm not sure this side of heaven we'll ever fully comprehend all the reasons and purposes behind all that has gone on . . . and I've said it before - that has to be okay.

The latest wave has brought peace, and that is always a welcome wave! I got away with my mom and sister for a Disney vacation - parks and a cruise (speaking of waves) to celebrate Liz's (my sister) graduation. It was relaxing and restoring despite the fact Mike was in the hospital while I was away. He insisted I stay on vacation, and God granted me peace and rest. Mike has gone 37 days seizure free. Can I begin to tell you how this has calmed my heart? Can I begin to tell you how nice it is to cuddle next to my husband at night, being free of (most) anxiety that he will seize and injure one of us? Can I tell you how nice it is to sleep through the night and in the same bed as my husband? So many nights we've slept apart - Mike not wishing to wake me with seizures. 37 days - let that sink in - 37 days. Mike's off one seizure med and we are hoping he can get off the other two if all goes well. You'll remember he has gone as long as 90+ days, so time will tell what seizure activity will look like. Since weaning off of the long time medicine that Mike slowly and painfully withdrew from, he is feeling better in many ways. That is a huge blessing to both of us.

Last week Mike was in the hospital. He had been sick for a week and went into the hospital for yet another emergency dose of cortef - the med that helps his adrenals fight infection. He ended up staying for 9 days as his blood levels and endocrine levels were all over the place! His kidneys weren't working, his GI track was a mess (and still is), he ran a fever of 104.6, his adrenals weren't working . . . . needless to say that kept him in the hospital for an extended time. He was told several times that he would see a neuroendocrinologist - not only did he not see one of those, he didn't see an endocrinologist but once, despite the fact all GI tests came back fine and all issues could be explained by his adrenal insufficiency. Wonder how much 9 wasted days is gonna cost me? AHHHHHHH!!!!!!!

Today Mike went to see his regular endocrinologist who is quite concerned at the rate the pituitary tumor is growing. It looks to have grown about 4 times the amount it was a year ago. All of Mike's recent symptoms could be attributed to this growth. The endocrinologist ordered blood work and said there is a 90% chance it has to come out due to the extreme growth over the last yr. The other concern is that because it has grown so rapidly, there is a POSSIBILITY it is malignant - I say possibility b/c we all know how one doctor's thoughts have been opposite of another's. The plan for now is bloodwork and depending on the results, an appointment with a neurosurgeon. And what do all these waves breed in me . . . .peace and hope that there is an answer to all we've endured.

Peace and hope . . . . when's the last time I've written about feeling those in my soul? It's been a while, a very long while.
Thank you for praying, friends, for walking through all this with us, for loving on us in more ways than I can write about or thank you for.
Becka