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!