Sunday, July 13, 2014

THE LAST LEG OF THE JOURNEY

I know I have not updated the blog in several days.  The mental and physical exhaustion just got the better of me.  So this "update" is lengthy, covering in retrospect, a bit more than the past week.  The blog is not only a vehicle for keeping our friends and family informed, but also a chronicle for our family, so it is a bit more detailed than most of you need.  Feel free to skip to the end for the "bottom line".

SATURNDAY:  
In the morning I arose very early so that I could arrive at the hospital well before the 7:30 a.m. meeting with Dr. Crane. I managed to make some coffee but real food had yet to be replenished at the house.  As a matter of fact, I had not even unpacked the car other than what I absolutely had to have for the evening and that morning.  I had planned on removing my bike, but Tom had put it on the bike rack and I could not find the key for the bike lock.  It could wait.  I should have left my car in the garage and driven Dan's car.....but my mind just was not functioning on all cylinders b/c of lack of sleep,  so I dragged all of our belongings that were packed in my car along with me, back to the hospital.

The drive up I-75 to West Chester was beautiful.  It felt more like an Adirondack July day instead of one in Cincinnati.  The early morning mist softened the concrete landscape of the expressway.  For a few moments I could almost forget the looming discussion.

Megan had a hard night. Sleeping in any hospital room is a challenge and she was very concerned about her father getting his pain meds in a timely fashion.  Because of his difficulty communicating she wanted to make sure to hear him if he needed something so that she could advocate for him. Aides were coming in to check on him, but it takes him so long to respond, she saw that he would not be able to get across what he needed before they quickly moved on.

Dr. Crane arrived shortly after 7:30 and surprised me by telling me that they were scheduling another MRI.  They would compare it to the one done on Wednesday evening in Utica to see changes; whether things were improving or getting worse.  He said we would talk about "treatment plans" after that.  I followed him out of the room to ask some questions.  I told him that I realized that the results were likely grave and asked if he agreed.  He did.  Even when you know hard things, it gets harder when they are confirmed.

During the day on Saturday, Dan was about the same except maybe a tiny bit less responsive.  He was still able to look at us some and to respond with a word or two at times.

At about 4 p.m., Dr. Crane returned.  I was surprised.  He looked at Dan, asked how he had been doing and then motioned that he'd like to talk to us in the hall.  Meg and I went with him.  I instinctively knew that this was going to be a  difficult discussion.  He didn't just speak to us outside in the hallway, but led us to a small room.  He told us that they had been unable to look at the MRI from Utica b/c their technology was so different, but that in the end, it really did not matter b/c what they saw on the new MRI from that morning was so devastating.  The tumor that had bled and caused the sudden episode of paralysis was fairly large and in a very sensitive area of the brain.  He said  that Dr. Warnick was on vacation but had wanted to look at the results.  He (Dr. W) said that there  were "an overwhelming number of new tumors since his last MRI here 7 weeks previously."   Dr. Crane said the only thing left to do for Dan was to begin hospice treatment.  Even though we  knew what was coming it was so very hard to accept.

While we had been in NY, and even a bit before, I had noticed subtle changes in Dan's behavior and a couple of not-so-subtle incidents that suggested the tumors were growing and that there were probably new ones.  I wasn't always certain it was related to his medical situation, but reasonably sure.  We were scheduled to return to Cincinnati on July 8th to be here for a scheduled MRI on the 11th.  I had been bracing myself for weeks, knowing in my heart that the news from that test would not be good.  This episode was only a few days earlier than that but Dan's condition was way worse than I had imagined and there was nothing left to do.....

Because Dan seemed to be sleeping and resting comfortably, and because Tom was not with us, Dr. Crane said he would speak to Dan about the results the next morning around 8 a.m.  

Later that evening, we got word that he would not be in until about 1 p.m. so we let Tom know so he could be with us.  

SUNDAY:  
Dan seemed less alert, less responsive, but relatively comfortable.  Knowing what was happening inside his brain explained it all but it was still so hard to take in.

When it was nearing the time for Dr. Crane to arrive we were remarking to ourselves how much less he had spoken through the morning.  But when Dr. Crane arrived, Dan opened his eyes and said, "Hi, Dr. Crane."  We were so surprised we started laughing.   But the "alertness" or at least much of how we were measuring it, quickly passed.  As the doctor asked him questions, he was unable to answer even very simple questions, just sort of staring blankly back at him.  I thought the doctor would just go ahead and say what needed to be said but instead invited the family out of the room and back to that small private conference room.  There, he once again explained Dan's physical situation to all of us and made suggestions for hospice care, explaining what hospice was and how it worked.  He had arranged for a hospice nurse from the place I had always thought we would use if/when that time came, to come and speak with us that afternoon.  I had asked Dr. Crane to tell us his best estimate of how long Dan would be in this sort of "limbo" and he admitted that they could never be certain but he thought it would be unlikely for Dan to survive much more than a week.   Because we were so familiar with West Chester Hospital and comfortable in that setting and liked and trusted the staff, I asked if it would be possible for Dan to receive hospice care there.  He thought it was unlikely.

After Dr. Crane left, the kids and I all knew we had to tell Dan whether he could hear and understand us or not.  As the three of us stood close to his bed and held his hands, I told him the results of the MRI and what that meant.  The kids thanked him for being such a wonderful father  and grandfather and for fighting so hard to stay with us so much longer.  They assured him that they would take care of me and that it was OK to stop fighting and to let go. We each told him through our tears how much he was loved and respected.  

When the hospice nurse arrived, she had some upsetting news for us.  One of Dan's good friends had lost a battle with cancer a few years earlier.  We had visited him at The Hospice of Cincinnati's Blue Ash in-patient unit and were impressed with the setting and Dan's friend and his family were very happy with his care there, so that is where I had thought we would place Dan if this time came.  But in late May they had closed the facility for a major renovation and it would not be available until sometime in October.  Great.  Now we needed an in patient hospice facility and had no idea which one to use.   

That evening Karla and Tom brought the grandchildren to the hospital to see their PopPop.  It was hard for them; they had just been having all kinds of fun with him at the lake and now he was lying in a hospital bed, barely able to respond to them.  But each of them courageously took his hand and talked to him.  I know he knew they were there.  He was able to say Matt's name aloud.

MONDAY:
The kids were available to stay with Dan so in the afternoon, I visited two other inpatient units.  Either of the units seemed fairly good, but each had some element that made me uncomfortable; not wanting to commit to moving Dan there.  I was still hoping I could convince the hospital to let Dan stay, I think, which kept me from committing.  The kids were asking friends if they had had any experience with hospice and we were getting good comments about most, but I was still having trouble getting past my emotional, subjective reactions.  The hospital social worker was wanting to know.  I just did not know what I was going to do.  

TUESDAY:  
Monday night Tom stayed with Dan.  We asked some friends to relieve him in the morning and stay with Dan till shortly after noon with other friends coming in then so that the kids and I could have the day to meet with some folks to make sure we had all the legal and financial things in place. Many of these arrangements were made 6 years ago when Dan was told he more than likely had only 3 to 6 months to live, so while I was pretty confident most things were in place, I could not remember the details and the kids needed to be assured I'd be OK.  

After the meeting we all had a clearer picture of anything that needed to be done and of all the arrangements that Dan and I had set into place so long ago and of the few things that needed to be done now.  I was reminded and they got a clearer picture of how much their father cared for me and for them and was so very responsible in planning and making sure we wold be OK.  

Meanwhile, Karla had heard from someone about Hospice of Southwest Ohio in Madeira.  We looked at it online and Megan and I decided to drive over and look at it.  It is a relatively small unit with only 9 beds but the nurse seemed pleasant and capable.  She had come from West Chester Hospital.  I'm not sure but I think that added a measure of confidence to my evaluation.   We had gotten word from the social worker that indeed, West Chester Hospital would not allow him to stay in hospital.  His condition was not "grave enough" to prohibit moving him and I guess that is the qualification that is needed.  So I began the paper work to have him transferred to the hospice unit in Madeira and called the social worker at West Chester to let her know we had made the decision.

WEDNESDAY:
The administrative nurse from HSWO came to the hospital to finish the paperwork.  The hospital had not gotten their paperwork completed which delayed the move.  With some help from friends, who facilitated things, we managed to get him moved by 3 p.m.  

AND BEYOND:

Since the move to hospice, many have visited, encouraging us, praying with us, laughing with us, sharing memories.  It is a bittersweet time of fellowship and sharing.  Many have called and sent cards....we are grateful.  

Almost every day since the day we drove to the ER in upstate NY, there has been a decline in Dan's alertness/responsiveness.  That continued right up to the day he moved into hospice and have since but not in as visible ways.  The signs are more subtle  The hospice staff are caring for him well, giving him pain meds regularly, positioning, suctioning, bathing.  And they are caring for us; reassuring us of his comfort, providing drinks and snacks, coming when we are concerned and tolerating all the visitors in and out.  We are glad to be here.

It is Sunday afternoon now and the doctor just came in.  He thinks time is most likely limited to a few days at most.  I think Dan must have heard Dr. Crane last week when he said the disease would most likely win out in less than a week and then he (Dan) determined to "beat the odds" one more time.  He did it!

Although we have known for 6+ years that this time was most likely coming, we have received so many miracles along the way, we kept hoping against hope that they would continue forever.  But this seems to be the last leg of his long, challenging journey.  He has fought hard and well.  He has continued to live life as fully as possible and has not "wasted his cancer".  He has encouraged many and pointed to Christ as his HOPE and his Savior.

Tom put a poster up in the hospice room that says "Play Like a Champion Today".  He is most definitely our champion! 


Saturday, July 5, 2014

BACK IN WEST CHESTER

Things have happened so fast, that I have not done a good job in chronicling them.  I'll try to fill in the blanks later.  If you check out my Facebook page, you can fill in a lot of the missing pieces.  But for now....this is what is most recent:

Thursday evening, I bit the dust at about 8 p.m.  Tom did not get to bed until about 11, having to pack both cars and take care of the most crucial parts of leaving the cabin for an undetermined length of time.  (We do have friends coming in to take care of a few things too, for which we are very grateful!)  We were planning to get up at 5 a.m. and leave by 6.  I was awake at 3:15 and could not get back to sleep.  I decided to tackle the 2 days of email I had not looked at.  In doing so, I found out that my sister's mother-in-law, a woman I very much liked and respected, had passed away.  They had just very recently discovered she had cancer but she had declined very quickly.  That news broke through a "dam of emotions" that had been carefully built up on and off over the last 6 years and I cried and cried.  I'm grateful b/c later then, I was able to focus better on accomplishing what needed to be done.

We awoke at 5, got the 3 dogs and 4 children in the 2 cars and left the cabin at 6:07...not bad, really.  We had dark, dark clouds and rain on and off all the way to Utica.  I was dreading driving all day in heavy rain.  

We had arranged for an early discharge and were hoping it would only take 15 minutes or so, but hospitals seem to have their own pace and fast would not describe it.  So we sent Karla and the kids to the cafeteria while we signed papers, got instructions and waited. The staff were very kind,doing their best to help which eased the pain of the waiting a little bit.  

Getting Dan into the car in a comfortable position was a huge challenge.  There were 3 folks helping Tom and they were pretty efficient at getting him from the wheel chair into the car, but situating him was the hard part.  His back hurt in any position and Tom thought he was most comfortable reclined fairly far back.  We positioned him with several pillows and then Tom left to gather his family and meet me at the front of the hospital.  But by the time I had exited the parking garage, Dan had slide down some and his R shin was pressed into the dashboard..   Tom repositioned him, trying to pad his leg from the bottom of the dash and we continued.  The storm looked like it was worsening and Dan was clearly not comfortable.  20 minutes down the road, just as it began to rain like it meant it,  we had to pull of the Thruway and try again.  Each re-poisitoning required pulling Dan up from behind and moving several pillows and blankets, trying to make him comfortable.  By now I realized that he needed to sit up.  His pain meds were beginning to take the edge off and we were able to get him reasonably comfortable with less chance of his sliding forward.  Even though he could move his L leg, it was very weak and he was unable to really adjust his position at all on his own.

From that point on, he mostly dozed.  That was not surprising....that is his normal state during car travel which is why I do most of the driving.  I was relieved, though, that he was able to yesterday.  My oldest granddaughter, Morgan, was in the back seat with Cocoa.  She rode with me to help if PopPop needed something, and she was our phone operator for communicating with her Dad.   I was very glad to have her with me.

The traffic was very heavy but thankfully the dark clouds were more threat than storm and eventually.....around 10:30 a.m. or so, they broke up and the day was quite lovely.  I was VERY relieved to not have to deal with poor visibility or standing water on the roads!

The traffic seemed to let up a tiny bit after about 3 p.m. and just south of Columbus, we met up with Megan who was coming to see her Dad.  At one of the Wilmington exits, we stopped and Morgan and Cocoa went in Tom's car.  They headed off to their campground where they have a camper and Meg and I continued on to the hospital.  We arrived safely at West 'Chester Hospital at 6:15 p.m.  

It took 3 people to move Dan from the car to the wheelchair but I think they did it pretty well without too much discomfort for him.  Once again, the "direct admission" seemed less than "direct" but we got it accomplished.  Since the wheels of admission which includes getting orders from the doctor, takes time and Dan was due for pain meds, I gave him a dose just before he was officially admitted.   He has some trouble eating but seemed able to take one pill at a time and managed to drink a milk shake on his own.

While they were still situating Dan, Megan ran out to get us dinner at Panera and we ate at the hospital, while answering the multitude of questions.

I was utterly spent by 9 p.m. and left to go home to try to sleep.  Megan stayed the night in Dan's room.  We were afraid he could not manage the call button and wanted someone to be there in case he needed anything.  

During admission, the nurse was very "clear" that the doctor would be there at 7:30 a.m. the next morning to speak with me.  Without it being explicitly said, it was obvious to Megan and me, and probably to Dan, that the talk would be about "end of life" issues.  Please pray for us especially about this.  

Friends and family both in NY and OH have been so incredibly gracious and helpful.  We will never be able to adequately thank you for all you are doing.  

Sleep has not been kind to me tonight, but I"m going to try to get an hour or so more before I need to return to the hospital this morning.  Jodee 

Tuesday, May 13, 2014

NEW OBJECTIVES

Dear Family and Friends,

Last week was the beginning of the new strategy for attacking the metastatic tumors in Dan’s brain.  Before, anytime he had radiation, the objective was to obliterate ALL tumors that were visible.  Because there has been a large increase in the number of tumors, that objective has had to be modified.  Instead of aiming for all of the tumors, the oncology radiologist and the neurosurgeon strategized on the 5 most urgent tumors; either b/c of size or location, to radiate.  Late on Tues. afternoon they treated 2 of the 5 strategized  tumors with stereotactic radiographic surgery. This is essentially the same technique that has been used in the past, but with a twist.  Originally, they were going to treat 3 on Tues. and 2 on Friday, but because of certain regulations regarding the recalibration of the machine, they opted to do only two the first time. These two, however, took a fairly long time b/c they were irregular in shape, requiring more “beams” of radiation to be shot out in more angles…..from my limited understanding…almost like multiple tumors.

In addition to the procedure taking longer, Dan was the last patient that day and inevitably, that means a later-than-scheduled start.   They were an hour and a half late beginning and the procedure took an hour and a half so it was a long time in the waiting room.

It is easy to let things like that upset us, but in all honesty, that particular office has been the MOST helpful, the kindest and the most responsive of any of the many, MANY doctors offices we have been associated with! That doesn’t mean the others were not those things....….mostly we have had very good experiences.  This particular office just stands out.  We notice and we are VERY grateful!  I hope they realize how much of a difference kindness and understanding and a helpful attitude makes to people who do not feel well or who are scared or who are worried or who are just plain overwhelmed, makes!

Friday morning, they treated the remaining 3 of the 5 that they targeted for treatment.  

We rarely notice any effect from these treatments but with the increasing number (59 so far by my calculations) the chances of not-too-pleasant side effects increases…..effects like memory loss, possible seizures and cognitive losses.  The timing for those types of side effects to evidence themselves is most likely 4 to 6 weeks.  Because of the increase of potential, they are starting Dan on a new drug in 2 weeks which has been known to greatly reduce and in some cases, reverse the adverse reactions to the treatments over a two to three month time.  They combine this new drug with a high dose of Vit. E.   

After the radiation was completed yesterday, we met with Dr. Warnick to ask some pertinent questions like:  “Is it OK for us to travel to our upstate NY camp for several weeks?”   “Is it safe for Dan to be driving?”  “What are the next steps?”

Dr. Warnick saw no reason we could not go to NY. We already have the new drug that Dan needs to begin taking in two weeks. We just need to make sure we have a two month supply of the rest of his meds before we leave.  The new insurance regulations make getting prescriptions filled out of town very difficult.

The driving issue was a bit of a downer.  Because Dan already has areas of swelling from being treated in some areas of his brain multiple times, the doctor feels that driving poses a risk.  It is impossible to predict the effects of the swelling plus there is potential for more swelling.  He recommended that Dan not drive.  In our car-based society, that is a hard pill to swallow.  He has been very cooperative about not driving for periods when he has had to be on heavy doses of pain meds, but believing that that was temporary, it was easier to deal with.  We are hoping that this is temporary as well, but he has less control or choice about this and at least for the time being, it is continuous.  I KNOW how disappointed he is, but as usual, he accepted it with grace.

The next steps: Tues. Dan will have a CT scan and then on Thursday, he will see Dr. Crane.  We are hoping to leave for NY soon.  In 2 months it will be time for another MRI and a consult with Dr. Warnick (neurosurgeon) and Dr. Breneman (oncology radiologist) to evaluate if we can continue with this strategy.  One small glimmer of hope is that the tumor that was protruding from his back (from the 10th right rib) has definitely gotten softer.  We are hoping this is an indication that the chemo is beginning to get ahead of the systemic disease and perhaps limit the “seeding” of new brain tumors. That might allow time to catch up on treating all the tumors that are there at the moment.  Only God knows….but He DOES know and is in control.  We need to remind ourselves daily of that truth.  Our circumstances here are NOT the big picture.  They are only preparation for the “big picture”.   Please pray for us to be wise enough to learn all that we are to be learning through this.

From the beginning of this journey we have determined to do our best to only allow cancer to be a “part” of our lives, rather than the focus of them.  The last couple of months has been a bit more challenging in that respect but I think we can still say that we are accomplishing the goal.  We have still been able to “baby sit” our grandchildren (sadly, there are NO babies in the group anymore!), we are still able to participate in family celebrations, in church life and in some special events.

Most recently, I was able to go on a weekend bike trip with a group of women from our community (mostly).We were fortunate with the weather both days. We traveled up to Cedarville, OH, near a junction of 3 long bike trails.  I was in the most “casual group” of riders (translation: slow) so we rode for 32 miles on Saturday, including a short walk through Yellow Springs,  a late lunch at Clifton Mills and then a short hike in the gorge. 




I was so hungry, I started eating before I realized I should really take a photo of these giant pancakes!           
Along with 2 eggs and bacon, it was quite a lunch!



Some cycling friends enjoying the day with me.



The old mill wheel turning in the water.



You can't really get the depth in this photo, but that water is a LONG way down!  This is part of the Clifton Gorge.

On Sunday, we rode 26 miles, but starting with a short hike in a more scenic part of Clifton Gorge and then after riding a bit, we stopped at The Wescott House, a Frank Lloyd Wright home, only to realize it was not open that early.  Bummer.  Then we resumed the ride to a stop at a small art museum at Wittenberg University which just happened to have an Ansel Adams show going on and it was a special FREE day (yes!)   (pictures of hike and museum).  After returning to our starting point, most of the ladies had lunch at Young’s Dairy, but I needed to get home a bit earlier.  The gal that was riding with me did as well, so we opted for a quick ice cream cone and drove home.



On the hike in the gorge.






Gearing up to leave the Wittenberg Art Museum.

I needed to get home in time to go out to dinner with Dan and also with Tom’s family to celebrate Tom’s 40th (yes…that’s right…we have a child who is 40!) Birthday which was that day (April 27th) and Dan’s 66th Birthday which was the following day.  It was a lovely time together with great food!  Major “Mimi” fail was not getting photos of the event.  

The very next weekend, I was able to go to Chicago to attend the Centennial Celebration for the nursing school I went to.  My class had been planning a reunion for that weekend for over a year.  We had the largest attendance as a class and we had  great time reliving our younger days…..until we looked in a mirror!  Bummer!  It was great, though, to be together for a short time and to reconnect.  Although our school has gone through a few changes over the years (we graduated 43 years ago!) it remains a solid program; one I’m proud to have a connection to.




Our graduation class composite.  Those were the days.........can you pick me out?


Some of us 43 years later.


The student nurses' dorm entrance.   Still looks just like it did when we were there!


Believe it or not...this is the CAKE for the 100th Anniversary Celebration!  The steps is the replica of the dorm entrance!  I missed seeing this in person b/c  I had to leave early but a friend sent me this photo.  Wish I had been there to actually TASTE it!  I think it is an amazing likeness!

Once again, I needed to return home early….the festivities continued through Sat., but I needed to be back in Cincinnati Sat. afternoon for our grandson’s First Communion, so early Sat. morning, I drove home. Thankfully, it was a beautiful day and the traffic was not too intense.

I got home in plenty of time to get changed and Dan and I were able to be with the family for the service and the celebration afterward.




Matthew's Special Day

In between special events, we have gotten to see our grandchildren a bit more than usual lately.  I was enlisted to help Emma with a school project about Ohio’s state flag.  She chose to make a cake like the flag so I helped her figure out how to decorate it and supervised the baking and decorating.



Those mixers can be tricky......


Adding the little details..........


I think she is happy with the finished product.

Another time we had all 3 here overnight. Because it was a school night there was homework to do:


Morgan and Matthew working on their homework on the deck.  Emma had gotten her work done at school.


Morgan's art project she was working on.  Mimi thinks its wonderful :-)

When homework is done and dinner is over, there might be time for a game of Uno or two with   PopPop    :-)

We are so very grateful that Dan has been feeling pretty well these last few weeks with the exception of his ongoing back pain. Some days it is not too bad and other days, it requires some rather stiff pain meds, but he is still able to participate in life…..things like watching Matthew play basketball or spending time with the grandkids.  He recently got fitted for his back brace and is figuring out how to best use it.

(Later) It is now Tues. afternoon and Dan just had the new CT scans done of his chest and pelvic area.  We will see Dr. Crane (the oncologist) on Thurs. afternoon to evaluate how the chemo has been doing.  

We are unspeakably grateful to all of you for your faithful prayers and continuing encouragement!  But  mostly we are grateful to God for the great mercy and grace he continues to show us.  Our prayer is that each of you experience and recognize that grace and mercy for yourselves.  

Jodee and Dan

Wednesday, April 23, 2014

WANTING TO BE LIKE JOSHUA

Dear Family and Friends,

Since the last post where Dan was just released from the hospital, he has been doing well.  He has been able to reduce some of the pain meds he was taking for pain in his back and he has been doing better drinking a decent amount of water each day and even has managed to put back on a few pounds!  We were very encouraged and so we made plans to visit my mom in Florida for a mini reunion.

Recently my sister, Nancy, was able to fly to Pompano Beach, Florida, from her home in Taiwan, to visit Mom.  When she comes to the states we all like to try to see her if at all possible.  Since this is a Benchmark Birthday Year for both Nancy (60) and my Mom (95), all the siblings and spouses made an effort to get to Pompano beach that same week so that 1) we could all be together, which only happens every 4 or 5 years or so, and 2) we could celebrate their important birthdays, even though the actual birth date is a bit later in the year. 


A very YUMMY Carrot Cake was center stage.

Mom was enjoying the family all being together....and doesn't she look GREAT for almost 95?!



Mom and Nancy both enjoying the tributes given to them.


The WHOLE FAMILY :-)
Back Row:  Jim, Dan and John
Next Row: Phil, Sharon, Jodee, Susan
Guests of Honor:  Nancy and Mom


 We were able to visit several of our NY friends (who spend much of the winter elsewhere) on the way to and from Florida, so that was an extra blessing.

The timing of the trip home was dictated by two MRI scans that were scheduled for the morning of the 18th ( Good Friday).  One scan was the routine scan of Dan's brain, and the other one was of his low back for the back surgeon to use to see if there were any surgical procedures that could be done to lessen his back pain.  After the scans we met with Dr. Breneman as usual to discuss the findings of the brain MRI.

Dr. Breneman is a very reserved, soft-spoken man, but that afternoon, he was very somber.  We both could tell immediately that he did not have good news for us.  In the past, on the initial MRI, they have seen one or two new, tiny tumors with the possibility of a couple more which then were confirmed with a high definition CT scan.  But the MRI that day showed 10 specific new tumors with multiple other “spots” that were sure to be confirmed as additional tumors by the HD CT scan.  

Back when Dan first began having multiple stereotactic radiographic treatments, we asked, “How many times can he have this done?”  The answer was, “It isn’t a question of how many times the procedure can be done as much as how many tumors can be treated at once.”  We were told then that if there comes a time when there is a “shower” of tumors showing up rather than a few individual tumors, that would indicate the need for different treatment.  Well, Friday’s findings are what they refer to as a “shower” of new tumors.

The only option left for treating the brain tumors is whole head radiation (WHR).  It would be a series of about 10 treatments, one right after the other, and it would be a one-time shot.  

With the stereotactic radiation, there have been almost no side effects at all with the exception of swelling after one larger tumor was treated and then the recent swelling that occurred from having a tumor treated in an area of the brain that had previously been treated.
But WHR almost always causes some debilitation.  It can (and often does) cause memory loss, cognitive issues, hair loss, fatigue and possibly nausea.  It can also cause hearing loss.  It often leads to dementia.  These effects may be temporary or permanent and the effectiveness is questionable. It may help for a few months or it may not help at all.  You can see that it is not particularly appealing.

Although we went to the doctor’s appointment expecting to hear there were new tumors, we really were not expecting that news and it took both of us by surprise. We could not totally process what we were hearing and Dr. Breneman suggested that we take some time to consider it…to research it and to talk to Dr. Crane (Dan’s oncologist) about it.  Our appointment with Dr. Crane was set for Tues.

So in between Friday afternoon and Tues. morning, we celebrated Good Friday and Easter.  It all seemed more intense and meaningful.  
Friday was more somber and Easter was more glorious.  How good it was to be reminded that ALL that we need for salvation has ALREADY been accomplished and Christ has ALREADY won the victory over death!!

When Tues. came, we were both hoping that maybe there was one more chemo or some other new option to consider….and yet neither of us expected it.  Dr. Crane gave us a more thorough overview of the pros/cons of WHR, saying that if it were he, he would do it, but that we needed to make our decision based on what we believed would be best for Dan. Bottom line is, the choice is to do WHR or to do nothing.  There is no other option.  Chemo is not able to affect brain metastases and besides that, I think we are on or close to the last chemo for kidney cancer.  

It felt a lot like 6 years ago when we received the prognosis of 3 to 6 months.  And yet, this time was different, too.  Although we were stunned by that prognosis 6 years ago, we really did not know what was ahead of us and God gave us much mercy and grace in finding good doctors and the latest treatments.  There was much to DO….we could throw ourselves into doing research and finding second and third opinions and looking for clinical trials and gathering you all to pray for us!  But even as we busied ourselves with all of that activity…we still knew that God was in control.  Dan’s life was still in HIS hands.  We were learning to lean on Him and to trust HIM even as we did our best to use all the gifts of medicine and knowledge and skilled doctors/nurses/technicians.  There were some really hard times and rocky roads along the journey but there was much joy and happiness along the way as well.  

But now we are at a different place.  We have gotten familiar with the journey.  We know the twists and turns in the road and are better at reading the signs along the way.  We have passed through many trials…and yet we are still a bit unprepared it seems.  We left the oncologist’s office with our minds swirling and our emotions in a jumble.  Our immediate reaction was deep sadness…and maybe a bit of fear…..fear of the unknown…  How in the world would we be able to make this choice?

I try to read through the Bible each year.  Sometimes it takes me a year and a quarter or a year and a half to get all the way through, but I just keep going and eventually finish  and then start over again.  Right now, in the Old Testament part of the readings, Israel is in the wilderness but getting close to the end of their journey and needing to capture Canaan so they can enter the promised land.  But they are fearful.  Even after all the miracles they have witnessed first hand….all the mighty things God has done just for THEM, they don’t trust Him.  They think they have to do it themselves!  

As we were driving home from the doctor yesterday, that story came to my mind.  We were being like the Israelites!  God has done so many miracles for US!  He has been so merciful and caring all along this journey….WHY would we think it is up to us now?  HIS plan for us IS the “promised land”!  Whatever that is….wherever that takes us.  The promised land WITH GOD and His plan for us is where we desire to be. We want to be Joshuas….ready to trust God no matter what.  Fearful or not, Joshua chose to believe God and was willing to follow Him, knowing God and knowing that His ways are always better…even when they are hard.   

Two songs have been playing over and over in my head these last few days.  One is a Getty/Townsend song called:
Still, Be Still My Soul, and the other is called “We Will Remember” by Tommy Walker.  The lyrics and the links to them are below:

KEITH & KRISTYN GETTY


Still My Soul Be Still Lyrics

Link to YouTube "Still, Be Still My Soul"    (an ad will pop up first...sorry...it's worth it to wait)
STILL, MY SOUL BE STILL

Still my soul be still
And do not fear
Though winds of change may rage tomorrow
God is at your side
No longer dread
The fires of unexpected sorrow

God You are my God
And I will trust in You and not be shaken
Lord of peace renew
A steadfast spirit within me
To rest in You alone

Still my soul be still
Do not be moved
By lesser lights and fleeting shadows
Hold onto His ways
With shield of faith
Against temptations flaming arrows

Still my soul be still
Do not forsake
The Truth you learned in the beginning
Wait upon the Lord
And hope will rise As stars appear when day is dimming


WE WILL REMEMBER  by Tommy Walker



Chorus 1
We will remember we will remember
We will remember the works of Your hands
We will stop and give You praise
For great is Thy faithfulness
(REPEAT)

Verse 1
You're our creator our life sustainer
Deliverer our comfort our joy
Throughout the ages You've been our shelter
Our peace in the midst of the storm

Verse 2
With signs and wonders You've shown Your power
With precious blood You showed us Your grace
You've been our helper our liberator
The giver of life with no end

Verse 3
When we walk through life's darkest valleys
We will look back at all You have done
And we will shout our God is good
And He is the faithful one

Misc 1
(BRIDGE)
Hallelujah hallelujah
To the one from whom all blessings flow
Hallelujah hallelujah
To the one whose glory has been shown

Verse 4
I still remember the day You saved me
The day I heard You call out my name
You said You loved me and would never leave me
And I've never been the same

So please continue to pray for us!  Pray that we will be like Joshua….setting our fears aside, trusting God’s plan for us and resting in that; all the while REMEMBERING all that He has done and is doing for us!

OH MY!  How God works...miracle after miracle!  I had already finished the blog today and was only waiting to put in the photos before I posted it and sent out the email.   With our physical therapy appointment and Walmart run (for prescriptions)  this afternoon and then needing to go to the grocery for a dessert for our Bible Study tonight at our house, I did not have time to complete the photos until now.  But just before the Bible Study folks arrived, we got an amazing phone call.

It all began last fall.  Dan's low back pain had gotten worse over the summer and he wanted to get one more opinion about a possible surgical solution so as soon as we got back from NY last fall, we started the ball rolling on getting him in to see Dr. Tobler, one of the premier back surgeons at The Mayfield Clinic here in Cincinnati.  It took quite a while to get an appointment and when we saw him, he really wasn't sure he could help Dan. He wanted to have some additional X-rays and have a specialist radiologist look at them and then get back to Dan.  Well, we hadn't heard from him in quite a while and with all of Dan's serious issues the last couple of months, that had sort of retreated to a back burner somewhere.  But just before we left for Florida, we got a call from Dr. Tobler's office to get a new MRI of his back and then made an appointment for us to see him yesterday.

After the devastating news from last Friday, and then again from Dr. Crane yesterday morning, it seemed pointless to even go to that appointment.  But we dutifully went and waited to hear what Dr. Tobler thought about Dan's back.  I suggested to Dan that we not muddy the waters by telling him about his brain scan;  we would just listen to what he thought about his back and tell him we would think about his suggestions.  

When Dr. Tobler came in, he began the discussion by telling us he had seen the latest brain MRI.  That was a surprise.....and then he wanted to know what we were thinking about doing about it.  We told him we really were still processing it all and had not made a decision.  He went on to talk about Dan's back, saying that it had not changed much since the fall and unless Dan was in excruciating pain, it might be best to try a back brace for right now and just watch it , while taking prudent precautions of not lifting heavy things or doing hard activities.  But then he returned the conversation to his brain scan.  He asked us if Dr. Breneman had conferred with Dr. Warnick (Chair in Neurosurgical Oncology at the UC College of Medicine.  He is also Co-Director of the Precision Radiotherapy Center in West Chester, where Dan has had most of his radiation.)  We really did not know.  We were so stunned when we were talking with Dr. Breneman, we never thought to ask that.  He suggested that we might want to get his opinion and offered to talk with him and ask him to call us.  This was yesterday.  He called tonight.   He felt we were jumping the gun a bit in considering WBR and suggested instead that they approach the stereotactic radiographic surgery from a different angle, going for the bigger, more dangerous tumors rather than trying to obliterate all of them.  That would buy Dan some more time without the more serious side effects of WBR and perhaps give the chemo a chance to get ahead of the disease in the rest of his body.  

We had not even realized that that was an option! We are so glad we kept our appointment with Dr. Tobler and very grateful for his thoroughness and for his willingness to call Dr.  Warnick on our behalf and VERY grateful for Dr. Warnick taking the time to call us and discuss this over the phone and then talking with Dr. Breneman about it. 

As it stands right now, we are waiting for a call from Dr. Breneman's office to set up the high definition CT scan that he and Dr. Warnick with merge with the Fusion MRI Dan just had.  Then they will plot out which tumors they will attack with radiation.  

In the meantime, he upped Dan's dose of steroids and suggested that his symptoms he had which sent him to the hospital last month were more likely a case of adrenal fatigue from being on steroids long enough for his adrenal to quit working adequately.  

We are SO GRATEFUL for this latest development and feel it is the right thing to do at this time.  We feel strongly God was moving on our behalf to cause all of these things to happen so quickly.  For the few who already knew...THANK YOU for your prayers!!  We have a God who hears and acts!  For most of you who had no idea that this was going on....you are also precious to us...and we covet your continued prayers for all of these later developments as well as for the requests put forward in the earlier part of this update.  We STILL want to be like Joshua!  Love, Jodee and Dan







Sent from my iPad,.

Tuesday, March 11, 2014

RELEASED!


Thank you all so much for praying!  The last couple of weeks have been "an experience" and we are happy to say that things are improved!

Today is Tuesday and Dan is being released from the hospital this morning.  He has an appointment (made weeks ago) across the parking lot at 11 am so we are pushing to get out of here by then. 

Dr. Crane is pleased with Dan's progress, as are we!  He has been on oral meds for 48 hours now and has been eating well.  NO NAUSEA!  And his thinking is much clearer, which is a relief to both of us!  They will take a month to wean him off if the steroids, which they have been using to fight the swelling in his brain. 

The appointment later this morning is with Dr. Breneman, the oncology radiologist. He will be checking on the tumor on Dan's rib where they did radiation a couple of weeks ago and we will be discussing the swelling from the brain radiation as well.

While no one likes to be in the hospital, we felt his stay here was as comfortable as one could hope for.  The room is private (they all are here) and spacious.  The only noise is from neighboring rooms raising or lowering their window shades or from the electronic machines in the room such as his automatically adjusting mattress and the IV regulator.  The wall of windows to the outside makes the room seem even larger.

The hospital is located in  a large commercial area which made getting food/coffee for me easier and helped me more easily augment the hospital meals for Dan......anything to encourage his eating!  

The staff has been pleasant and attentive and we are so grateful for so many blessings in the midst of this hard time!  Emails, phone calls, cards, flowers, dog sitting,  food and visits from so many friends....and prayers untold!  

The plan is to try to keep him "balanced" with his meds now for the rest of this week and then restart his chemo on Monday.  I am hoping the chemo had nothing to do with all of the nausea and that the reintroduction will happen seamlessly.

So.....thank you all for your loving support and please continue to pray for us as we adjust to managing it all at home, especially that we would REMEMBER that God is our Fortress and our Comfort and all is in His faithful and GOOD hands!  

Wednesday, March 5, 2014

WEDNESDAY'S ENCOURAGEMENT

Dear Friends and Family,

It is early morning...I'm sitting in the dark in Dan's hospital room as I type this;  he is still sleepy..dozing on and off.  The massive amounts of drugs he is on does that to you.

I had  been having a lot of trouble sleeping so yesterday Dan sent me home mid afternoon to rest and try to get to bed early.  Since I didn't have to let the dog out (Tom took her to his home) it allowed me the freedom to go to bed earlier, whenever I felt I could go to sleep.  So I just sort of crashed on the couch for the late afternoon and early evening, trying NOT to nap too much, so that I would have a better chance of sleeping through the night.

I managed to get to sleep a little after 9 p.m. and not awaken until 5:15 a.m.  That is pretty good compared to my recent track record...so I'm THANKFUL!

Last night while I was relaxing at home, Dr. Crane called Dan to tell him that the MRI showed swelling in his brain where the last radiation was done.  That may not sound like good news, but actually, it really IS!  There are drugs that can lessen the swelling and that should give us a better chance of controlling nausea from the chemo and pain medicines much more effectively.  I just found this out this morning.  Dan had not called b/c he did not want to wake me if I were asleep and when I tried to call him at 8 p.m., he was already asleep.   :-)

The docs still have to get him set up on the new med to deal with the swelling effectively and then get the others working in sync so that he can eat and be relatively pain free.

So, we praise GOD for some answers as to what the problem is and petition Him for effective solutions!  Thank you all for praying with us and for us!  We are so grateful for your  walking through this with us!   Jodee (and Dan)

Tuesday, March 4, 2014

TUESDAY UPDATE:

After only 48 hours at home, Dan has been re-admitted to West Chester Hospital. The nausea persisted and he was unable to keep anything down the last 24 of those 48 hours. So after calling the oncologist this morning, he asked us to come in. After a chat, he ordered an MRI to rule out swelling from the radiation on his brain a couple of weeks ago, or any new tumors, and gently suggested going back into the hospital. It wasn't something Dan was excited about, but he felt so bad, he agreed without much urging. I was already convinced that would be the quickest path to a resolution even though his first stay didn't give us the answers we were seeking. 

Tom and Karla have taken Cocoa home with them so I don't have to time my hospital visits around her needs. That is helpful. And Meg is coming down for a quick visit tomorrow evening. 

Now if I can just get a good night's sleep..........

Tuesday, February 25, 2014

VISITING WEST CHESTER

Dear Praying Friends and Family,

It's early morning on Feb. 25th...I'm sitting in Dan's room at (UC) West Chester Hospital keeping him company till he gets picked up by ambulance to be taken to The Barrett Center for radiation.  The place he normally receives radiation is right across the parking lot but bc of Medicare regulations, with him being admitted to the hospital, he cannot receive radiation at a "satellite location" so they have to send him all the way downtown.  Yeah.....another reason why we don't want government running our "health care"!!  

Anyway....,the last couple of weeks have been pretty hard on Dan.  He has had multiple issues overlapping with many drugs which all can have multiple side effects.  The bottom line is that his nausea and weight loss were increasing while his eating/drinking and mobility were decreasing and the doc felt he needed to be in the hospital to try to "reset his system" and get the nausea under control and the pain meds working effectively.

Understandably, Dan is not particularly happy about being here, but Dr. Crane and I both agree that he needs to be.  We are hoping things can be righted in 3 or 4 days but time will tell.  Meanwhile Cocoa and I will hold down the fort at home.

My sister, Sue, and her husband, John, are stopping in later today on their way to Florida.  John always gets us laughing and since "laughter is the best medicine", we anticipate his shortening Dan's stay here by a day or so......(no pressure, John).

Thank you for continuing to support us with prayer and encouragement as we go day by day on this journey.  We are so grateful for each of you!   Jodee (and Dan)


Saturday, February 8, 2014

PRAISE and PRAYER

(Written Friday, Feb. 7th) 
Hi folks...... Just thought I'd update the last post...sort of a "post-postscript" of sorts.  Today is Friday, Feb. 7th and this morning Dan had his fusion MRI on his brain and his chest CT scan.  The MRI shows only a couple of new spots; one, though, is bigger than usual.  Often, when they do the brain CT scan to create the hologram (which they use for plotting the radiation) they find more.  We are hoping there will not be many more this time.  So...PRAISES for there only being two visible at this point and PRAYERS, please, that they won't find many more.

The CT scan of his torso showed that the tumor we saw externally on his back right before Christmas is, as thought, part of the tumor on his R tenth rib.  Unfortunately, that indicates disease progression (that was also presumed --thus the change in chemo that occurred right after Christmas) and there appears to be new cancer activity in his lower spine, thus his increased pain. Sigh.

Dr. Breneman (the oncology radiologist) called Dr. Crane (our oncologist) to confer and they may decide to radiate that 10th rib and possibly even the locations of disease on his spine to help with the pain.  Right now I'm waiting at Dr. Breneman's office as they create a new mask of Dan's entire head.  That is what they use to totally stabilize his head for the radiation. So...PRAISES that we could accomplish two tests, the Doctor's visit AND the mask creation all today.  PRAYERS, please, that the two docs will figure out how to best alleviate Dan's back pain while not making chemo treatment less effective, and that the radiation of those brain spots would be able to happen quickly and that they would be effective.

I think I forgot to mention in my last update that we had just seen a back specialist for a second opinion about possible treatment for Dan's back pain.  He said that there was so much going on in Dan's x-rays, that it was very difficult to tell where his pain was originating from.....the spine, or the affected rib.  They talked about two different surgical procedures but said that at this point they could not promise positive results.  Dr. Tobler was going to confer with a radiology-back specialist before making more of a solid recommendation.  At that point, we were unaware of the disease progression in his spine found in the CT scan today.  So this complicates things even more. So, PRAISES for such amazing diagnostic tools and educated, experienced physicians to interpret them for us. And PRAYERS please, for just the right interpretation of all the data that has been collected so that Dan will receive the most effective treatment and pain relief.

While none of this "news" is very surprising, I have to admit it is a bit disappointing.  We were hoping that the change in chemo would cause a decrease in evidence of cancer rather than allowing for an increase.  We offer PRAISES, though, that the new spots in the brain, although larger than before, are still small enough to be treated with the miraculous stereotactic radio graphic surgery they have been using.

This next We'd.,(Feb 12th), Dan will have an endoscopy. That is so that a GI specialist can get a look at what is giving him abdominal pain.  We are hoping it is an irritation caused by all the meds rather than more cancer.  We PRAISE God for providing another doc at the last minute so that we could find out what's going on. Please pray that this new. "team member " can come up with a fairly benign treatment that will heal his tummy.  

I'm offering PRAISE that a friend from church was able to get into the conference last minute and so she will be accompanying me.  We will be in different tracks located on opposite sides of Lafayette, but at least we will have someone to eat dinner with and decompress with...and believe me...you NEED to decompress after 8+ hours a day of learning!!  Please PRAY for Meg, as she becomes chief cook, bottle washer and chauffeur for her dad this week while I'm in Indiana...and for safe travels for Colleen and me as we get to drive through more snow (yippee!!) 

Thanks for slogging through all the medical jargon to keep track of us on our "journey".  We need and really appreciate each of you and the support and encouragement you continue to give us and all of the many many prayers offered on our behalf!  
Jodee (and Dan)

Wednesday, February 5, 2014

SCRAMBLED APPOINTMENTS

Yesterday my sister Sharon, emailed us, telling us that she remembered that that was the day of Dan's MRI.  Some people are so organized! I sat down and began to write an email to explain where we were and realized that it was time for an update…..so here it is:

 She is correct that Tues. was, in fact, the day Dan was SUPPOSED to have his MRI, along with a CT scan and then a Dr.'s appointment.  BUT last Friday the oncology radiologist's office called to tell us that they decided he should have his MRI at another location, which, of course, meant rescheduling. His nurse offered to reschedule it plus the two other appointments we had already planned around that, for this Friday.  I was grateful for that but a bit frustrated that the doctor did not call to tell us about and explain his decision.  It is just one of the many frustrations one faces when things are pretty much out of your control . 
It has been a hard week.  After all of that shuffling around, but on the same day, the office of the doctor who was scheduled to consult about his stomach pain (that appointment was set for today), called to tell us that they had to cancel that appointment and the first new appt. would be a MONTH later!   Dan really cannot wait another month to find out what is going on there.  The oncologist's office said they would find another doctor.  It took them all day to find someone else to do the endoscopy in a reasonable time frame.  That is now set up to take place next Wednesday.     
Anyway........when we saw the oncologist last Tues. and discussed the difficulty Dan is having with his appetite, he prescribed marinol, a derivative of marijuana, to help with Dan's appetite and maybe even enhance the pain meds.  He is losing weight rapidly again  :-(  and is down to 170.  The doc also pulled back on his chemo to lessen the side effects but the plan is to gradually return him to the original dose as the side effects (hopefully) diminish.
The results of that plan are muddied because Dan misread the instructions and was only taking half the marinol (sp?) he was supposed to, which, when you are taking a bazillion meds, is pretty easy to do.  Anyway, he was unable to go to church for the second Sunday because of his back pain and general yuck so one of our Biblestudy friends who is a practicing nurse, stopped by after church to see him.  She told him he needs to pursue better pain management because there are other combinations they can try till they find something that does a better job. (I have been telling him this but he is reluctant to use the strong pain meds, worrying about dependance developing).  But after her pep talk, he let me call the doc to ask if he could take a bit more Percocet.  The doc on call agreed but suggested we ask Dr. Crane for Oxycodone without the Tylenol so he could take more without overdosing on the Tylenol.  We are emailing him about that today.  Never a dull moment! 

We were scheduled to attend our annual Biblical Counseling Training Conference in Lafayette IN starting Sunday.  That is a week long training that runs from 8:30 a.m. till about 5:30 every day and a couple extra sessions in the evenings.  He realizes that he cannot go...there is no way he could sit in folding chairs for 8+ hours every day, but he still wants me to go.  I told him I'm not comfortable leaving him, especially since he can’t drive.   A couple in our Bible Study was willing to stay with him but he hates "imposing" on people.    So I called Meg (we are supposed to impose on our kids, right?) to see if she could work remotely from here that week.  She had an important meeting Monday morning that she needs to BE at, but will come down after that.  Tom will be here Sunday evening and Ill have a friend on call for early Monday so if Dan needs to get anywhere, he will have a ride.  (He is on too many strong meds to drive right now.) Thanks, Tom and Meg!

Now snow is predicted for Saturday/Sunday so I’m keeping a close eye on the forecast for Cincinnati all the way to Lafayette!  One day at a time!

Meanwhile I'm going to physical therapy twice a week for my wretched feet which, as my podiatrist says, are "a hot mess"!  And their being out of whack has created issues with my knees and sacrum...(or did he say it was the other way around?)....you remember the Sunday School song:  .......the ankle bone's connected to the shin bone; the shin bone's connected to the thigh bone; the thigh bone's connected to the hip bone....oh hear the WORD of The LORD!, don't you?    Either way, whether the problem started in my sacrum or my feet, I've got some things to straighten out...literally!   The podiatrist has crafted orthotics for me which I will pick up on Thursday....yet another appointment!  Ah yes!  Mom wasn't kidding when she said "getting old is not for sissies”!!  

This morning we awoke to about 4 inches of new snow topped with a layer of ice.  (The grandkids were off school yet again!  I'm thinking they might have to go a bit longer in June to make up for some of these snow/cold temp days off!) I wasn't sure I'd make it to my physical therapy session, but after digging out about a third of our driveway, my trusty Honda got me up the long lane to where the city plows had cleared.  The roads were still a bit dicey but I got there and back OK.  Today was my third physical therapy session.  The therapist did some more sonic wave treatment and tried some electro-stimulation, but I was very sensitive to that so he said we needed to do more sonic stimulation first.  I now have some exercises to do on my own (ugh) and will do my best to do my part.

What are these interesting objects?  No, my new hobby is NOT paper mache sculpting....These lovelies are the plaster molds of my feet from which my orthotics will be made.   I get them tomorrow.  I’m SO hoping that they help and make walking more comfortable for me, even while the physical therapist is trying to correct my major issues.

Back to Dan….it is THIS Friday that he will have his high definition MRI  (I think that is the reason they had to change the venue) , then a CT scan and then the appointment with his oncology-radiologist.  I always get a bit anxious about this test (yes, I KNOW I shouldn’t but my body doesn’t always listen to my head!) knowing they are looking for brain metastases.  If they find more, I believe they are planning on creating a new mask for his radiation treatments.  The one he currently has is the original that has been used for 5 1/2 years!  So it looks like we will be spending the day in West Chester.

While our highest desire is to embrace God’s plan for us, we don’t shy away from sharing our hopes/desires with our Heavenly Father.  So I’m praying for renewed faith and trust in His plan, all the while hoping that that will include a tumor-free brain MRI this time around. 

So that pretty much wraps up the latest medical news from Ashley Lane.    Even when our schedules get turned upside down and sideways, God knows what's going on at each moment and He won't be confused ;-) although sometimes we are.  Our good friends, Mary Jo and Dwaine know what I mean!!  Sorry about missing lunch with you guys!

Again, and again, we thank you for your prayers and encouragement and willing help.  We are so grateful for the loving support. 

Love ya,  Jodee (and Dan)