surgery #2

Hi friends,
I know, I know, I'm overdue for a blog update. Much has happened in the last couple weeks. Mike has continued healing from the gall bladder surgery. The pathology report came back and concluded what the surgeon suspected - multiple infections - one very sick organ. Mike's stomach and GI track are learning to live without the gall bladder and his pain is getting better. We did return to the ER Friday night as Mike was in quite a bit of pain - someone lifted something heavy too soon - he hasn't seen my killer biceps, apparently. ahem.

Mike also went to see a neurosurgeon today, and he said the tumor has definitely grown and should come out. He said Mike could have radiation as well to shrink it, but eventually it should come out. The surgeon could not guarantee that headaches would get better after the surgery but it should help the endocrine issues. If it doesn't, we have to stick with medication and try to figure out the headaches. One step at a time, though. We are hoping for an early July surgery date as Mike has a wedding to do in a month, and then we'd like to get away for a couple days for our anniversary before the surgery/recovery and the start of another school year for me. We are waiting to hear back from the office to schedule the surgery. Overall, we feel good about this decision. We feel like it is the right decision and are hopeful that it will help with the endocrine issues (likely) and headaches (hopefully). And what's a summer without some minor brain surgery?! That's how we roll!

I was told two weeks ago that I was moving to a new position in the middle school. You might remember I've talked about this position, really wanting to make the change of positions. I was told I couldn't take that position due to my full- time status and then things changed and I was told I could. I was thrilled. I didn't realize how much my current position was taking from me. I've seriously thought about doing something different in the near future as I really feel like in the last 5 yrs there has been a big shift in education - it is so much less about educating kids and investing in their lives which is where my heart is. All that said, I was thrilled to be moving, and working with a team I really like. Unfortunately today, it was suggested I may not move - that I stay in my current position, and I lost it - full out cryfest! This job takes SO much out of me, and with all I've carried for the last 2 yrs, I just don't have the emotional strength to do this again. There are many VERY complicated factors involved with this, but today was very crushing . . . . and the first thing I thought was, life isn't turning around to be better, life will always be hard. Life will never be restful. I will always have to be strong. I don't have a choice but to work and carry health insurance, and while I am THANKFUL for a job when there are so many without one, this job is taking an unbelievable toll on me . . . . one day at a time.


In better news, . . . . . . . . . . .MIKE IS STILL SEIZURE FREE!!!!!!!!!! It is likely at this point that it was a side effect of medication . . . . and one day when life slows down we may need to deal with the emotions of that. We asked many drs for a long time whether this was a possibility, and were told "no" every time. sigh HOWEVER, our prayer was, and remains, that we would learn what we need to throughout all this. One day at a time.

Happy Mother's Day

The dictionary defines mother as, "to care for or protect like a mother; act maternally toward" and synonyms for mother are: "tend, nurse, mind, raise". On this Mother's Day it is only appropriate that I give kudos, a giant shout out, if you will, to my mom. What a year and a half. What utter disparity we have felt. What pain and agony life has dealt us. We have wanted out - out of life, out of sickness, out of all this side of Heaven has to offer. When I have been in my darkest moments, and wanted nothing more than to be done, I called mom. It hasn't been once or twice, it's been countless times. And countless times she has stepped up to be what I only hope I can be a fraction of someday.

She has tended - she has been at Mike's side while he was falling on his face several times daily. She has been by Mike's side through surgeries and procedures and painful medical tests. Tended.

She has nursed. She has been Mike's physical nurse and my emotional. She has helped us feel better in ways we didn't know we were hurting. She has advocated for Mike in countless hospitals. She has cared for him at his sickest moment when I just couldn't juggle all the balls anymore. Nursed.

She has minded. Mom has seen the best of the Durkees and the worst - she has observed and noticed things about us that needed correction, in love. A yr and a half of illness can be unpleasant on marriage and personal character, but mom had a way of encouraging, in love, the things that she saw in us. Minded.

She has raised. At 32 yrs old, I can say mom is still raising me. She has lived a lifetime of struggle with Ben and has an attitude of joy, encouragement and tender-heartedness. How many times I called her in hysterics telling her I couldn't do one more day, telling her God left me, that He didn't love me. And in her gentle spirit of love, she would remind me not to "let the enemy convince you He doesn't care. He knows intimately what you are going through. He understands it better than any of us could. He has not taken His eyes off of you for one second - even if it feels that way". She sent me that note, when I was perhaps at my lowest in all of this. And at the end she wrote, "wish we could take it all away" . . . . and at the very depths of my heart I know that's true - that they did desire to take it from us. In the depths of my heart I know she ached for us and yet was determined that God was there and we'd get through, just like she has all these years with Ben. She has indeed raised - raised three kids, one with immense challenges, raised my eyes in times of darkness, and raised my hope when I thought I had none. Raised.

Kudos to my mom - kudos to the moms out there who "tend, nurse, mind, raise". May you know you are loved. May you feel celebrated beyond Mother's Day. May you be convinced on the toughest "being a mom" days that on the other side of this life there is One that will hold you and tell you "well done". Love you, mom, more than words can type. My prayer is that one day, by God's grace, I may be half the mother you are . . . for I will count that great success and joy. Most of all, I will know that I am doing what God has called me to, in the enormous job of being mom.

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

sweet 16

How sweet it is to be seizure freeeeee! 16 days seizure free, that is!!!! I have NO idea how long it's been since Mike's gone that long.

I should stop there, because that is the BIGGEST thing going on in our lives right now . . . . but I'm never at a loss for words. ahem. Sunday I take off for a week of vacation with my mom and sister. I am very excited, and so many Cincy friends have stepped up to look in on Mike and cook for him - he may be sad to see me back, he's gonna eat so well! With our break in the seizure action, my anxiety has actually gotten worse. I want desperately to hold on to this. As we know, this thing has been on again off again and the last round we were "on again" I wasn't sure I was gonna make it through. There is so much anxiety that it will get that bad again. I'm just waiting for us to crack under life's tremendous pressure when I should be at peace about seizure free days. I've lived for so long waiting for the other shoe to drop and this has given way to anxiety. I'm trying, friends - trying to pray through it, trying to trust through it, trying to be thankful and enjoy every seizure free moment. My hope is the vacation will be restoring and relaxing and Mike will be fine while I am gone . . . I'm choosing to trust he will be.

Signing off for a week or so. Be blessed, friends.
Becka