Sunday

Oops!  I spoke to soon. I know that I have been pushing the last few weeks, but overall it has worked  with minor consequences sometimes.  But it hugely caught me today.  I woke up early to a pretty strong headache.  A nap this afternoon didn't take care of it and I tried a medication I had used in the early days of headaches with no results.  What a vivid reminder of some not so good days.  It isn't nearly as bad as I have had over the years, particularly for a while before the chiari surgery and then later for a while before the shunt.  However, it is an unpleasant reminder that I had better start being a little more careful in how far I try to push myself.

Thursday

Well, I see that I have neglected my blog for a while!  This season has been so busy that I really couldn't keep up with the basics.  But now it seems that things are slowing down and we can all catch our breath.  What an incredible blessing, though, to be home through this season and participate in so many of the Christmas things that I missed last year.  It seems like I spent most of December last year in Baltimore.  It is a nice place and there are great people there, but it sure is nice to be home.

So I went to the neurologist locally last week.  They had an opening and I asked to be on their call list.  It went very well.  As the she began asking my medical history and I briefly explained a small portion of it she interrupted me with a look and the statement, "you know I am only a small town neurologist."  Thankfully, after I explained that I am simply looking for a local neurologist that would help with certain things she seemed to be very willing to work with me.  So now we are waiting for authorizations for certain treatments and really hoping that I might be able to get it in yet before the end of the year.  That probably won't happen, but it would be nice for insurance deductible reasons.  We'll see.

It seems that I have gotten slightly stronger over the last little while.  I still really need rest in the afternoon, but I have not been as miserable the day after overdoing it the last few times.  Big improvement!

I have so much to be thankful for!  2012 has been a challenging year and we pray that 2013 may be a little less eventful!  :)

Thursday

I am a little slow posting again.  Although Tuesday I came home feeling decent considering the travel and big day, it hit me like a ton of bricks yesterday!  So I really only got the basics done yesterday. Today is better although it is slowing me down quite a bit again later this afternoon and this evening.  Hopefully tomorrow will be better--it just seems to take a few days to recover sometimes from a busier day.

The news from the gynecologic oncologist was quite positive.  The "mass" is still there.  However, he has renamed it from a concerning abnormal cyst to the hydrosalpinx.  I had misunderstood, evidently, that both were there.  His theory is that the hydrosalpinx was caused by the abdominal infection I had a few years ago.  So chances are that it has been there for a while and we just didn't know it.  Since it has not changed in size since they started monitoring it in March, he feels that it is stable.  As I've said before, under normal circumstances he would have removed it right away when it was found but because of my abdominal surgical history the risk is higher having surgery than not.  So I will need to have ultrasounds every 6 months indefinitely to be sure it doesn't start changing.  I asked if we could go once a year, but he didn't find that acceptable. :)

The appointment with the neurologist was honestly disappointing.  Our appointment ran 2 1/2 hours behind schedule so when the doctor rushed in he was obviously behind schedule and in a big hurry.  This was the first time that I felt that we didn't have a "good" thorough appointment at JH. (I had always worked with a neurosurgeon before, so although I had met this doctor once before, I hadn't worked with him). He hadn't looked at my record at all prior to coming into the room and didn't know what was going on.  After discussing my case for a couple minutes, he decided that the goal should be to improve the headache and the symptoms like the noise sensitivity, etc.  He decided that I should try something entirely different to see what happens.  He decided that we needed to try Botox injections in my head and neck.  I honestly am skeptical that this will be a solution, but I will probably try it just to see.

We are still so thankful that I am doing so much better than I have for years.  When we think about where I have been, with indescribable head pain, I have come a long way.  Yes, it would be so wonderful if I could get better yet, but we continue to remind each other of how far I have come.

Since the injections would be repeated, we are working on getting a neurologist in the area to work with me on that, hopefully to follow the protocol of JH just to give it a fair shake.

At this point, I am really tired and my head is a little more irritated than usual. I am a little overwhelmed with all that is happening, as many moms may be at this time of the year, but I think that makes my head more irritated.  So we will just take things one day at a time!  Please don't be upset if I am not communicating as well as I should be, though!

**By the way, my dad is doing amazingly well!  It will take a bit more time to fully recover, but we are so thankful that the Lord spared his life!

Tuesday

I will try to update more tomorrow because I am pretty tired right now!  But it is good to be home!  We flew back in today.

Overall things went well.  Our younger two kids were happily surprised that we actually came home the day we said we would.  Usually we have been delayed.  So that was a happy experience for our family to have!  :)

I will leave it at that for now!

Once more today

Thankfully dad came through surgery very well!  He is already feeling better and my mom says that he looks a lot better, too!  The doctor showed a before and after picture of the artery that was blocked.  The before picture showed an opening about the size of a needle just barely allowing blood through.  The second looked dramatically different with the opening large and blood flowing well.  They call this particular artery the "Widow Maker" because if it is blocked, you are done.  Oh, we have so much to be thankful for!

Dad will be in the hospital overnight and should be released tomorrow!

Thursday afternoon!

Thank you for praying!

My dad had the angiogram this morning.  They discovered a very large blockage in the main artery in front of the heart.  The opening is very narrow for blood flow, so they were not at all surprised that he was not feeling well at all.  The doctor talked to my mom and sister about the results and quickly scheduled the placement of the stent at 1:00 today.  If this artery had become fully blocked, it would have been fatal so we are so thankful that they are taking care of it right away!

The surgery will last around  1.5 hours and he will be staying in the Heart hospital overnight tonight.  There is a second artery that is 40%-50% blocked but it is a more minor artery so they are going to watch that one for now but not take any action with it at this time. 

Thursday

Please pray for my dad!  He has been having chest pain for quite some time--maybe 6 months or so--but didn't tell anyone until last week when the pain became too strong.  He has also been experiencing increasing weakness and exhaustion.  After seeing a cardiologist this week, they found that he has damage at the bottom of his heart.  The doctor isn't sure what it is yet, but they are doing an angiogram this morning at 10:00.  It may be necessary to put in a stint or multiple stints or it could result in open heart surgery. At this point we just have to wait and see.

My dad has always been very strong and tough.  It is hard to see him like this, although we have been seeing over the last months that he has been slowing down and not being his typical self.

We trust the Lord in this, too, know that His plan is perfect.  It isn't easy seeing him struggle physically.  My parents have has so very many hardships and difficulties.  It is a comfort to be reminded in the passage that I previously quoted, though, that the Lord disciplines those He loves.  I am quite sure He loves them very much!

Tuesday

Life continues to take my breath away.  I would never have imagined how busy having four kids, going in four different directions, could be.  Therefore I haven't had much time to write.

I would say that I am back to where I was with the old medication at this point, but I'm not finding that I am gaining strength.  That is quite frustrating to me!  My goal is to be able to get through full days without having to rest.  Getting to the point that I can tolerate a little more noise would sure be nice as well.

Last week for Thanksgiving we spent time with Kyle's family on Thursday.  That went very well and I enjoyed it although I was pretty tired by the time we headed home.  Then on Saturday we spent time with my side of the family.  It was wonderful to be together with all, but very difficult.  I just can't tolerate the noise of many people and the activities of so many kids.  By the time I left there I was miserable.  So hard to want to spend time with both families but it isn't so easy.

So as I have complained and been a little frustrated with the lack of improvement, we had a sermon on Sunday based on Hebrews 12.  I am going to quote a few verses because they are such an encouragement to me!

"And have you forgotten the exhortation that addresses you as sons?  My son, do not regard lightly the discipline of the Lord, nor be weary when reproved by him.  For the Lord disciplines the one he loves, and chastises every son whom he receives.  It is for discipline that you have to endure.  God is treating you as sons.  For what son is there whom his father does not discipline? . . . . . For the moment all discipline seems painful rather than pleasant, but later it yields the peaceful fruit of righteousness to those who have been trained by it."

We leave on Saturday for Baltimore.  Kyle is going with me and one of my sisters and her family will be staying at our home with the kids.  We are so thankful for her!  I visit both the neurologist and the gynecologic oncologist on Monday and have another ultrasound done.  We are praying for good answers, more ideas to improve my head and strength.  Our tickets are booked to take us back home on Tuesday.  Please pray for us!

Monday

Wow!  Life has been so incredibly busy that I haven't taken the time to write on my blog for a while. 

I woke up not feeling well last Tuesday yet but as the day progressed it seemed that I started feeling better which is unusual because I usually decline as the day goes by.  I think the medication finally started to kick in after several days of the higher dose and it is helping quite a bit.  Life is much more tolerable day to day which I am thankful for.  The headache is still there all the time, of course, but more manageable.  The ringing in my ears still seems louder than it used to be but I can deal with that.  I don't feel that I am gaining strength with the new drug which is disappointing.  That was the main reason for the switch.  I still become both physically and mentally exhausted every day and if I push it one day it often carries into the next.

Last week was a marathon for this old lady!  :)  We had a busy week with the kids I had meetings in Des Moines Thursday and Friday.  Going to the meetings was a challenge that I was concerned about but it went very well.  Thankfully I have a perceptive leader that recognized that I was wearing out around 2:00 the first day so he sent me off to the hotel.  The next day went well, but I was sure tired that evening!  I haven't been able to go to many meetings over the last years so it felt pretty good to attend and see folks that I haven't seen for some time.  Another step in the right direction.

Saturday was a swim meet for Tara and then Sunday we had the blessing and privilege of witnessing our older two children make profession of faith.  This simply means that they publicly proclaimed the Lord as their Saviour and officially became members of the church.  What a blessing!  So amazing--what we have prayed for since their birth.  Then we had a small lunch after church for family and a few of the kids' friends.  So by the time that was done and the week was finished I took a three hour nap and still felt tired! 

So we continue taking things one day at a time, thanking God each day for the strength to complete the day.  I so hope and pray that the Lord renews my strength so that I can get through a whole day without a rest and significant exhaustion.  When I say that I just long for being "normal" I simply would love to get through whole day without a rest and without being physically and mentally a goner!

Wednesday

I heard from the neurologist today.  I had left a message on Monday but assumed that I may not hear right away since they are in Baltimore.  The PA called today and doubled the medication that I have started to see if it will control things a little better. It will start in the morning and I anticipate it will take a few days before I see any change.  I am hoping that it will better control the headache as well as the side effects.  The days typically start better but I deteriorate as the day goes by.  Evenings can be challenging.  Again, I have been much worse but this is challenging.

Sunday

"Worship the Lord in the splendor of holiness."  Do we always remember that when we worship in church that we are entering His house in the splendor of His holiness?  Quite an incredible yet sobering reminder of our responsibility and privilege when we enter God's house each time to worship Him.

I continue to struggle a bit.  Again, not as bad as I have been in the past so I hate to complain.  However the situation is becoming a little frustrating so I plan tomorrow to call to see if I can bump the dose up of the current medication.  There are positives and negatives of this drug in comparison to the old.  If I can get the headache a little more controlled and some of the symptoms that go with it, I would prefer this new medication.  In the morning I don't feel as groggy and I am glad that I don't sleep so deeply that I don't hear anything.  My digestive system seems to be working better and in that respect I feel better.  I can't say that it is helping with my strength improving but I am still trying to give it a little time.  The negative is that it is not controlling my headache or the symptoms like the ringing in my ears as well as the previous drug. 

Life is incredibly busy so for all those that email me and things I apologize for not responding or being in communication as I would like.  Work is super busy since we are still short staffed and it is hard to keep up with all of the kids needing to go in a variety of directions.  I still have to rest for a period of time every day or I pay dearly.  That is becoming more frustrating as well.  There are so very many things that I need to get done that are not getting done and I'm not sure what to do about it. So I need to continue just trusting the Lord has a plan and shut my eyes at the messes around the house. :)

I am going back to Baltimore in December for a few days to see both the neurologist and gynecologic oncologist.  It will be a quick trip flying out on Saturday, seeing doctors on Monday and flying home Tuesday.  Hopefully I get a good report and it will be the last trip for a long time.  The good news is that since I was able to buy plane tickets a ways in advance (Kyle is going with me) the price of both tickets this time were about half the price of one ticket the last couple times that we flew. 

I have been so blessed in many ways.  So again I hate to gripe about the challenges that continue.  However, as a few have reminded me, this is the place that I need to write how things are really going and not sugar coating the truth so this is the reality of how things are going.  Thank you to so many for continued prayers.  The Lord has been so gracious and merciful to us. 

Monday

Well, the transition of decreasing of the medication this weekend went much better!  I could still feel it, but I overall felt much better than I have the last few times.  So now I am down to 10 mg and only have one more decrease and that will be eliminating the old drug Friday night.  So I am finally about there!

So far it seems that the new drug is somewhat effective.  I suspect I will be going up a few more times because the headache isn't as well controlled and the ringing in my ears is pretty loud yet.  I haven't been able to see an improvement in strength or energy but I am willing to give that time.

It sometimes amazes me that I am doing as well as I am.  I really never thought that I would attain this level of health even though I am not fully healed.  It is such a blessing to be able to do some normal things each week.  The Lord has been faithful to our family and we have so much to be thankful for!

Tuesday

I am doing a little better today, for which I am very thankful!  Boy, going back into those headaches is difficult again.  It seems that there is a delay of a day after decreasing the dose of the "old" medication before I hit a wall and then struggle for a few days.  We'll see how tomorrow goes but thankful today was better.

Friday

I should be writing a little more regularly.  The days have been up and down.  A few of the days haven't been good at all and some days a little better.  Today is probably one of the better days that I've had, and I am praying that it perhaps may be the addition of the new medication that is helping.  My head is still hurting more, but not as badly as it was the previous few days.  My ears are still ringing rather loudly, but that is tolerable if my headache stays a little more controlled.  So I continue to take things day by day.  Tonight I take a 10 mg decrease again in the older drug so it will be "interesting" to see what happens the next few days.

tuesday

Just a quick note.  Thankfully today was a little better than yesterday.  Not great, but more tolerable.  I heard from the doctors office and he is going to let me start the new drug now and then increase it as I decrease the other.  Hopefully that will be effective.  No guarantees that it will work but there never are guarantees in life except knowing that the Lord is directing my every step.  That is truly a comfort!  Sounds like I will need to make a trip out there and will start looking at tickets for early December is the way it is looking right now.

Monday

Things are not going in the right direction.  It is honestly quite frightening to me right now even though most likely if I increase the current drug back to where I was I would get back to where I had been.  It is difficult to know whether it is best to continue to try to wean off of this drug so that I can try the new one.  I am afraid of the headache taking over my life again, but I so badly want to gain more strength!  I did leave a message for the doctor's office to call so I will wait to see what he has to say.

Hopefully today is just a bad day and tomomorrow I will wake up and do a little better.  It just seems like the headache is gradually increasing but more pronounced today than it has been for some time.  My ears are ringing very loudly again, too, which I can handle on its own but it is usually not a good sign. 

I will continue trusting the Lord has a plan and that He will work it out through the doctor's decisions.

Wednesday

Things have been going okay, but not the very best.  Each day is different, but I am becoming more and more frustrated with the lack of strength.  It is an issue that may just be how it is and I may need to find contentment in that.  However, I did finally call the doctor last week about it.  He felt that a switch of a medication would be warranted.

This hopefully will be a good thing, but the transition could be rough.  I have to go down, 10 mg at a time from 50 mg to 10 mg.  When I get down to the 10's, I will start the new drug at a low dose at the same time and work up week by week until I am doing better.  They would like me to go back out there after the transition to evaluate.  Not quite sure how all of that will work yet.

The hope is that the current medication does slow the body down.  I take it at night and sleep heavily and perhaps it is hindering the strengthening progress.  The new drug will be taken in the morning and has the opposite effect.  So the hope is that this medication, which has the affect of speeding the body up, will aid in improving my ability to regain strength.

The transition could be a little rough.  I've been on the 40's since last Friday night and I am beginning to feel the difference in not so great ways.  My ears are ringing loudly again and my head is feeling a little more painful.  If it helps it will be worth it.  If it doesn't and I need to go back to the old medication, it could be a trying ordeal.  After all of this being said, I am still in much better condition, headwise, than I have have been for several years.  So I know that this is something that, with the Lord's help, we will all get through.

"Be strong and of a good courage, be not afraid nor dismayed, for the Lord thy God is with you, withersoever that goest."  Joshua 1:9

Saturday evening

I have a great deal to be thankful for!  I had another ultrasound and heard from the oncologist office at JH on Friday.  He feels that the cyst that has been troublesome is collapsing!  That is wonderful news!  So that leaves me with the hydro-salpinx.  He feels that it is a lower risk so I am down to an ultra-sound every 6 months now!  Woohoo!  I was ready this time to just tell him that I am just ready to get rid of both of them but they saved me from an unnecessary surgery.  Actually the Lord divinely ordained this sequence of events and I am very thankful!

I can't remember if I mentioned in the last post, but I haven't been feeling as well.  Perhaps I am overdoing it.  The hours at the office have been longer than I probably can handle and add to that the stress there and home and perhaps that is the culprit.  I don't know.  Overall, I am still doing well.  But I am dragging and don't feel as well as I had been. 

Last night was disappointing to me.  The drill team, which Kylie is part of, performed last night at the football game.  I had gone to that town at 4:00 for Riley & Tara's eye appointments and after let them play in a park while I rested in the van.  Then we met Kyle and Kylie for the tailgate party, but by the time it was done, I was too.  I get so physically tired that I felt almost sick so I headed home and had to miss the performance.  It just was too much to wait for it to start.  I was sad, but that is just the way it is sometimes.

Thursday

Well, exhaustion continues to rule the day.  I am becoming concerned about not picking up a little more.  A full day of activity, even light activity, can put me into quite a tailspin.

I had my ultrasound on Tuesday with the gynecologist.  Unfortunately, the cyst didn't get smaller and the hydro-salpinx is still hanging out.  I haven't heard from Johns Hopkins yet although they did get the cd of the ultrasound this afternoon.  The gynecologist here walked in the door after the ultrasound and her first question in greeting was, "remind me why you haven't had these surgically removed yet?"  I reminded her of the multiple abdominal surgeries resulting in many adhesions.  She responded that they must have determined the risk of waiting must be less for me than another abdominal surgery.  In normal circumstances both would have been removed some time ago.  They will both need to be continually watched because both are a risk for cancer.  So another ultrasound is scheduled for six weeks.  She said that I would be a "serial ultra-sounder" meaning that there won't be an end in sight since both have to be watched because they both pose a risk.  I will ask more of the gynecologic oncologist but I am ready to just ask for them to remove them both so I can move on.  Another surgery would stink, but I just want to get it behind me.  So I will wait to see what he says, and I suspect my desire won't be weighed as heavily as his reasoning about the risks both ways.  So I will need to be content with the decision either way.

I am thinking about perhaps visiting a doctor to see if there is an explanation for my exhaustion.  The reality of my life is that I just don't have the time to rest the necessary amount to do okay.  With four kids and a business to run, being short of help there, etc., it is a big job for a healthy person.  I'm just not sure what to do to get myself going a little better.  Please pray for strength for me!  It has helped in a certain respect having the kids in school, but the other side of that is now all of their activities start and they each need to be at different places at different times.  So my previous thought that I would pick up when the kids started school just hasn't become a reality.

Friday

It has been quite a while since I have posted which is a good sign for me!  I continue to stay pretty level and that is good as well!

My strength continues to be a challenge that can be frustrating, but I only need to think for a moment about where I have been to contain that frustration.  :)  Honestly though, I really do hope that I can gain more strength and ability to function more normally.  I am making some progress but I have a very long ways to go!  Just being able to get through a day without needing a rest would be really nice.  If I over extend myself, my whole body begins to tremble and I just feel awful.  So I try not to let myself get to that point since it takes time to recover from that.

We made a rather quick decision to go to Montana.  We had planned to take this trip nearly a year ago but after all the surgeries and problems this year we nearly decided we needed to wait.  Perhaps it would have made more financial sense to wait and it would have been nice to be stronger but we decided that we just needed to go.  We needed that time as a family away from the reminders of my illness and I think we all needed to be refreshed and energized.  The Lord has been so good to us!  We decided to just go, found very reasonable rooms and had a great deal of fun!  What a blessing!

I grew up in Montana but had not been back there for 5 years which was when my parents moved closer to us.  So the last time I was there was more stressful and discouraging as we packed my parents up and sold most of their things on an auction.  It was such a good reminder that "things" don't matter.  We can't take them with us when we die and they are so temporal.  Anyway, we spent a couple days in Conrad where I grew up.  We saw a couple friends and visited with relatives in church.  The Flikkema's were so gracious to us by meeting us for breakfast Saturday morning and then having us over for dinner and supper on Sunday.  They made the time in Conrad that honestly can be a bit discouraging to me a time to remember good things.    It was fun, though, to go back and show our kids where I grew up, where I went to school, etc.  The younger two were babies when they were there so it was all new to them and there were fun memories for Tanner and Kylie as we drove past grandpa's old farm.

We spent several days in Glacier Park, again reliving so many times in my past of spending childhood vacations there.  It worked out very well for me to rest in or around the van while Kyle and the kids went on several hikes and did some sightseeing.  It was such a blessing for me to once again be there, breathe that fresh Montana air, spend time in the mountains and feel the peace of resting in the mountains so majestically created by God for our enjoyment.  I don't think I will ever understand how a person could be an atheist after spending time there.  The glory of God is so abundantly clear in His creativity in forming such splendor. I think we all needed that time of peace and quiet, a time for reflection and joy.

The traveling there and back was probably the biggest challenge.  Both times I hit my wall on one of the days of travel (we took two days each way) and was so exhausted that I trembled like a leaf.  My kids questioned how riding in a car can be exhausting but for little old me, it is just difficult and more than I could easily tolerate.  But sometimes it is worth while to over extend myself and this was such a time.  Besides that I was so glad to hear that people were surprised at how good I am looking.  I finally think I am to the point that I am not an obviously sick person.  That is a relief because I didn't always like the attention that illness has brought me.  It was always attention that was well intended and loving but I would much rather just blend in and I think I am finally there more of the time!

We praise the Lord for this time together as a family.  I didn't imagine that this would happen again so for our family to travel and enjoy a time away together was just such a blessing!  We are so grateful for the small things and grateful for this big thing in our life to enjoy!

Wednesday

I had another ultrasound yesterday.  This time I decided to try to go to a gynecologist, hoping that I would get results right away and that she would be more familiar with what is on the ultrasound than a radiologist and that the ultrasound tech would be more familiar with these things.  It worked out pretty well.

The hydrosalpinx is still there.  The problematic cyst is still there as well.  The good news is that the cyst has gotten smaller it seems.  It has been hanging out a long time!  There were a few other cysts there as well, but they were normal.  The one is still problematic and needs to be watched yet, so I will be going back there in 6 weeks.  She was surprised that all of this hadn't been surgically removed but after I explained the complication of having  multiple abdominal surgeries it made more sense.

It was nice to get positive news, but I would sure like to just have this behind me!

Monday

I proudly celebrated another birthday Saturday!  At this point, I still feel like it is an accomplishment rather than something to dread.

My strength continues to be slow in improving.  It seems that there is little to report but yet that is good because it means that I am not declining again!  I think this is the longest period of time that I have done well for a very long time!

We are missing our older two kids now!  They are at a youth convention in Look Out Mountain, Georgia for the week.  Kyle took a carload of kids to the airport and they left at 12:45 this morning.  He got back at about 5:30, slept a couple hours and away he went again.  I think he will really crash tonight!  So glad the kids have this opportunity!  It is such a faith builder to attend this convention.  It isn't just fun and games but they study and learn about things that are pretty important and along the way have fun.  I can't wait to hear the stories that they will be sharing when they return home!

Monday

So I haven't been writing much and that is a good sign!  I continue to move forward, slowly but surely.

Honestly, sometimes this recovery stage is challenging in a different way.  I am so much more aware of things and I can see so much that I need to do, haven't done, etc.  I know to a certain extent that is normal for everyone, but I have things that literally haven't been done for 6 years!  Where do you start?  That becomes overwhelming and discouraging.

The 4th of July celebration was wonderful!  We live in a beautiful country with freedoms that we take for granted.  It is refreshing to think about the gift that we have been given living in this country.  We had a fun day at the lake and enjoyed the fireworks that night.  Unfortunately it took me a couple days to recover from the fun--another reminder that I have a ways to go to gain my strength.  I really didn't do much that day, but it must have been too much!

I continue to do well, but maybe a little more "subdued" with the realities of life.  It is a blessing to be doing as well as I am but along with the blessing come challenges that I didn't think about or expect.  I feel badly about maybe "complaining" a bit about being well!  That seems wrong!  But I have sought to be honest and truthful in my writing and this is where I am finding myself.

Wednesday

It has been a while since I have written.  Seems like we have celebrated the good news for a while and now settling down into routines again.  All very good, normal things.  We are very thankful!

Overall I have just discomfort in my left side.  Now and then it will hurt more for a while, but then seems to recede again to discomfort.  My head took a slight turn for the worse Sunday evening.  I decided to go to physical therapy on Tuesday since it was staying and that seems to have turned things the other way.  I will go once more tomorrow and then we'll see how things go.

Strength continues to be my biggest challenge at this point.  I suppose that since I have been in varying levels of pain and disability for six years, I'm not just going to quickly pop out of it!  So we take things bit by bit.  I go to about all of the kids' activities, work a little more then half days and then try to rest in the afternoon so that I can get through the evenings.  Seems like this has been the routine for a long time now, and I don't see it changing anytime soon.  I can tell that my level of activity is increasing a little, which is good.  Humanly speaking, the waiting for additional strength is a challenge!  I hope that if I continue moving forward and trying to a little more bit by bit that gradually I will improve to the point that a full day isn't utterly exhausting!  :)

Having the "real" mom and wife has been probably a little challenging for my family.  Overall, very good but still just different.  I think it probably feels like they are living with a new person in the house and there are always periods of adjustment when someone "new" moves in!  The Psalms particularly provide so much solace to me.  The Lord has His hand upon me, He has a path laid out for us and it is a good plan.  It isn't always so easy, but He never promised easy.  But He did promise that He is always here, always plans each little part of our lives, and loves us more than we can comprehend.  With that knowledge we will continue to move forward, day by day, living for Him.

Saturday

We got the very best of news last night!  The gynecologic oncologist at Johns Hopkins had the ultrasound read by his radiologist  there and looked at it themselves.  They had an entirely different reading than the radiologist here!

The bottom line is that he does not believe that it is a tumor and therefore not cancer.  He gave it a fancy name, but it basically  means that the fallopian tube is blocked and therefore enlarged.  It is now 7cm x 4cm x 3cm.  Fairly good sized, but not anything to be alarmed about.  The blood flow that was noted is also normal because blood flow does go to the fallopian tube.  He feels that at this point, the surgery would be a higher risk for me than waiting to see what happens with this.  Since I have had many abdominal surgeries I have a lot of scar tissue and adhesion's so another surgery would further complicate those issues.  We will continue to follow it with another ultrasound around the middle of July.

I am so relieved!  Two nights ago I was watering our garden and I wondered if I would be around when all of the tomatoes started to ripen.  Last night Kyle and I had decided to go on a date knowing that it may be the last time we have the opportunity to do that for some time.  We got the call after we had left town and it was so fun to celebrate the good news rather than just try to enjoy our last outing for some time.

The Lord has been so good to us!  The last weeks have been difficult as we tried to prepare for another medical battle.  We are thankful that we chose to get the opinion from JH again and thankful that I didn't have surgery that would have turned out to be unnecessary.  It also reminded us that God is in control of all things and that we need to continue to trust!  This issue isn't done because they are going to continue to follow it.  If it becomes quite painful I still may need to have it removed but at this point we are thankful to just leave it alone and continue with normal life!  :)

Wednesday

As I was prepared, I did not get answers again today.  I called first thing this morning and JH discovered that the ultrasound, when uploaded, errored out meaning that it hasn't been looked at by anyone.  Why someone wasn't watching this is beyond me, but it is what it is.  So I don't know how many more days it will take, and they were unwilling to give me any idea.

I also received a call from the scheduler today in Omaha.  She knew nothing, but said that their first appointment will be July 2 for a consultation.  

So we continue to wait.

Tuesday

Still no news.  I am really hoping tomorrow is the day, but I also have a lot of experience in waiting for doctors.  So I hope it is tomorrow but know that it is just as likely that it won't be tomorrow.

It has become harder coping with this.  Perhaps it is similar to the steps of mourning.  First I was in shock.  Then I went through some time of anger at having to deal with yet another surgery.  Now I think the reality that I could have cancer has sunk in and thinking through the consequences of that potential answer.  We are praying that it is not cancer and that this will be a small hiccup in my recovery.  But it will be surgery number 7 in a twelve month period and I am so very sick of surgeries, dealing with doctors and all that this entails.  If there was a way to walk away from all of it I would but that really isn't an option.  Ultimately, I am tired.  Just very tired.  The thought of another medical challenge beyond a surgery is just too overwhelming to contemplate for long.

One step at a time, though.  God has a plan.  I may not like it, but I know and trust that all things are in His hand--me and my family.

Thursday

I don't have a lot of news.  JH just received the cd so it took much longer than overnight as expected.  They will review it and call next week.  We are also getting an opinion from a gynecologic oncologist in SF

I visited with my local doctor--who I so appreciate--and he explained that what hadn't been seen before with this cyst is that there is now blood flow to it.  It actually did grow a little bigger rather than get smaller.  It is "solid" in that it isn't the fluid filled cyst like usual.  He felt more positive, though, because I am not losing weight and not feeling sick.

So now we wait.  I am optimistic but perhaps I am just a hopeless optimist!  I can't imagine having cancer after everything else that has happened.  So perhaps it is called denial.  Regardless, we trust the Lord has a plan and we will continue just taking things one day at a time!

Monday

The "fun" may be beginning again.

Last Wednesday I had the ultrasound again but thought it would all turn out fine.  Evidently it didn't.  I spoke with my local doctor office and Johns Hopkins Gynecologic Oncologist and both seem to think that the cyst we've been watching is going to need to come out quickly.  I don't have final confirmation of this, but the two office expectations seemed to be similar in saying they are concerned and things will probably happen quickly.

I had the actual ultrasound sent overnight today to JH.  Previously I had just had the radiologist report sent there.  They hope to call me Wednesday after reviewing the ultrasound and then a plan will be made.  I am trying to mentally prepare for another medical journey.  We are praying that it will be a simple laproscopic surgery with an easy recovery.  Of course, ovarian cancer is the big concern and if they find that the surgery will turn into something much bigger.

We are all reeling in shock that this is happening.  Since I have been doing so well I really had put this out of my  mind and behind me.  Well, here it is again.  We trust that the Lord has a plan in all of this, but it isn't so easy right now!

I will post again when I know more.  Please pray for our family as we are dealing with an unexpected turn in the road.  Last week I was so happy as I walked through the hospital corridor for the ultrasound, thinking that perhaps my medical journey had ended.  Now it appears that I was privately celebrating too soon.

Wednesday

I had my ultrasound again today.  I won't have any official results or decisions from the doctor for a while yet.  However, I was able to find out two things.  First, the complex cyst they are watching is still there but perhaps slightly smaller.  Second, I have another cyst that is very large!  To my untrained eye my guess would be that it isn't concerning but the tech thought that it is a complex cyst as well.  She is surprised that I am not feeling pain with it.  So now we will see what the doctor has to say.

My head is still doing well.  I am just amazed that the Lord has answered our prayers in this way at this time.  Today as I walked through the hospital to have the ultrasound done, I had to stifle excitement that perhaps I won't have to spend much time in hospitals in the future!  I know hospitals are places of healing for which I am thankful, but I really have spent way to many days in hospitals over the last 6 years and I would prefer to call those days history!

It is interesting to me how life has changed.  While my head was bad, I was providentially able to block conflict and difficult things from my mind.  If I allowed myself to think about difficult things my head would just get worse very quickly.  It truly was a gift from the Lord that let me so successfully block those things because I just couldn't deal with them.  Now, however, I am not able to block those things.  And there are some things going on right now that hurt and I would  like to block them!  There are so many blessings in having a clear head, but this has been the hardest part for me.  In addition, I am seeing so many ways that I have lacked as a parent and wife over the last years and it has been a difficult transition for everyone, including myself, to have the "real me" back.  Of course, even thought my head is much better I know that I still lack in many areas but I am trying to improve some things but it isn't easy.

In all of my prayers for healing, I really didn't think about the things that I would need to deal with if I were healed.  I am so thankful and grateful for having the opportunity to begin living life a little more normally.  But there are challenges that I didn't anticipate.  Perhaps this is a reminder from the Lord that I will continue to rely on Him for all things and that He still is in control of each moment of my life.

Tuesday

I haven't written for a while, and that is a good sign!  I continue to do well.  I have so much to be thankful for!

The last two weeks have been very busy, though.  It is starting to take its toll on me.  I am enjoying and appreciating each thing that I have been able to do, from attending events my children are part of, graduation parties, and even talking to a great group of students at OCCS about my journey with the theme of perseverance.  What an honor to be part of my family and friends in ways that I haven't been able to before!  And I am so thankful that the Lord could use me humbly to talk to students about my life's journey the last six years.

However, I can feel that I need to figure out a way to slow down.  I am just not feeling as well right now so I suspect my body is giving me a warning to watch it!  If we can get through this week yet, I know many things will be quieter and easier.  Again, they are all good things and things I am appreciating being a part of but just a little overwhelming. I truly do have so much to be thankful for!

Saturday

I continue to marvel at my blessings.  This week was a super busy week, with something every night.  Last year I was not able to do much of anything and this year I made it to each event and enjoyed it!  Tired?  Of course, but still pretty awesome!  I so appreciate the opportunities that God has granted me with better health!

As Mothers Day comes tomorrow, I think about my husband and children.  Many times I asked the Lord to take me to my eternal home and now I am thankful that His answer was no.  This celebration of Mothers Day is a joyful day for us, but for many that have lost a mother, it really is a sad reminder of those that are missed.  I am thankful that my husband and children are celebrating and not mourning on this day.

We had a recital today that was impressive, a concert last night that was outstanding and enjoying each event was an accomplishment that I don't take for granted.  Kyle and I celebrated 21 years of marriage on Thursday.     It is such a blessing that we made it to this milestone!  I am so thankful for a husband that has loved me and stood beside me in the "sickness" part of our vows of "in sickness and in health."

My strength is improving very slowly.  I know that I am improving.  Of course, I could always hope that it would be faster, but for now I am thankful that I am continuing to move in the right direction rather than the wrong direction.

Tuesday

Time is going by so quickly.  It always seems as if May is a busy month and I am so glad that I am able to enjoy these activities!  Last year at this time I was not really functioning at all and missed nearly everything going on.  What a lot of progress I have made from a year ago!

I continue to improve, very slowly but surely.  The Lord knows my future and His plan for my life.  For now it seems that I may always have a smaller headache, but we will see.  My strength is coming back slowly but I do wonder if I will regain all that I have lost over these years.  For now I am just very thankful that I am able to do the things that are important to me with rest in between.  My wheelchair continues to be my back-up plan if we go anywhere that requires much walking.  I have made it completely around one block now, though, and that is a huge accomplishment for me!  It has been a long time since I have been able to do that!

This blog began as a way for me to write down my thoughts about my health.  Communication in any form with a strong headache is difficult.  So this became a way that I could let people know how I am doing and so that people would know how to pray for me.  Since I am improving so much, I am seriously considering ending this blog.  My thoughts over the years have been that this would be a good record for my children to have.  While they are young, it seems that they may not fully understand all that has happened through their childhood. I pray that they  may have a deeper understanding of what our family has endured by God's grace when they are adults.

I hope to have this journal printed with the loving comments that have been written over the years.  It would mean a lot to me if you have read this blog once or many times or even if you began the journey with me if you would write a comment.  The comments don't need to be remarkable!  I have had so many people over the years tell me that the read this blog but that they never comment.  Some day it would be such a blessing for the kids to see that so many prayed for and cared for our family.  The comments on this blog have been such a blessing to me!

I will probably write a couple more times, particularly after the next ultrasound. The Lord has blessed us so much!

Wednesday

Good news today!  The doctors office called (early!) with the results of the ultrasound.  Evidently in March the ultrasound showed the cyst as being 6.5 centimeters.  It shrunk down now to to 1.8 cm.  Since it is still a complex cyst, they still want to monitor it so I will have another ultrasound in 4 weeks.  So glad that I'm not going to Baltimore for surgery for now!  :)  Great news!

The Lord has been so faithful to my family and I.  What a blessing to know that nothing happens outside of our Lord's control.  He has ordained for me each step, each joy and each sorrow and provides the grace to endure anything that He has ordered for my life.  God's grace is always sufficient, no matter what!  We have been to the point of total despair, longing for relief of pain that was beyond unbearable.  Yet He was and is there, providing for us in such a beautiful way.  I never would have chosen this path.  I never dreamed that I would experience the incredible intensity of pain that I have experienced at times but God knew it.  We would have also never anticipated the expressions of love and concern that have come from people close to us, those we haven't seen for years and many that we have never met!  It is such a blessing to experience the body of Christ reaching out to us and enveloping us in love and prayer.  We serve such an awesome God!

Monday

Today I finally heard from the doctor.  Unfortunately, they were confused and wondering when I would be coming in for an appointment for the results.  I explained again that I would like to find out the results by phone and if I need surgery I will go back there.  So, even though they received the ultrasound last Thursday, the doctor probably won't look at it until Thursday or Friday.  At least I know they have it.  It will be nice to put this behind me one way or another.

I continue to do well overall.  I apologize to many in that I have not been good with communication.  Each day seems to fly by so quickly and with limited energy I just don't get some of those things done as well as  I should.

Friday

Right now I would describe myself as just plain tired!  :)  It has been a challenge figuring things out at the office and needing to learn quickly since we are now short staffed.  The kids have been busy and even if I am not running all over with them, it is just exhausting.  It is a blessing to be here and a part of it but I look forward to being closer to full strength so that it isn't so overwhelming.  I know it hasn't been so long, but I do wonder if my strength will ever completely return.  Time will tell.

I still haven't heard from the doctor about my abdominal issue.  I checked with the office that did the ultrasound and they weren't able to send the ultrasound electronically as they had hoped so it was mailed.  If I don't hear the beginning of next week I may  need to get another copy and Fed Ex it.  Mail between here and there has not been so reliable in the past.  We are pretty good at the waiting game, though.  We've had lots of experience in that!  :)

This week I finally decided to start going out a bit without my hats.  The scars still show, but I don't think they are quite as startling as they were.  I still get some interesting looks but I do when I am wearing the hats, too, so that is okay.  Progress!  Now that it has cooled down again I might wear them a little more. It is amazing how much "insulation" hair gives!

Tuesday

Several days have passed since I last posted.  I have been holding off hoping that I would hear from the doctor but I still haven't.  I continue to be optimistic and will post as soon as I hear from him.

I continue to do very well in regards to my head.  Yes, the headache is still there but it is minor and I would be thrilled if it stays like this or even gets better.  My strength is slower in coming.  I know that it will just take.

I have had some time since feeling better to think a bit about life in general.  With my head feeling better, I am finding that I am noticing more things.  My house hasn't stayed as neat and clean as I would normally like.  I am more aware of conflicts and problems where before I'm not sure if I just was unaware or if I was blocking things because I couldn't deal with it.  The house not being as clean and neat as I would like just isn't such a big deal--it might bother me but it isn't a priority.  Dealing with some challenges my kids are having is a much bigger deal.

As Americans, we put such a big emphasis on "things" that are precious, things that we keep up so nicely, but things that in reality are not important!  We don't take our money or precious "things" with us when we die. Being conservative about spending habits is one thing, but becoming obsessed with money and things is quite another.  Our relationship with the Lord and with family and friends really should be our top priority.  Why focus on stuff that "will pass away" in time?

I am thankful that my ill health has made things more clear to me.  Again, I wouldn't have chosen this path, but it has been a walk in which I have learned so much.

Thursday

I had the ultrasound this morning.  The tech wasn't able to tell me a lot but she did say that the complex cyst is still there but she suspected it was smaller than 5 cm.  My first hope was that it would be gone.  This seems like the second to the best, though, and I am optimistic.  It seems that if the cyst is shrinking rather than growing, I shouldn't need to have it removed.  We'll see what the doctor has to say, and that will probably be next week.

Life has been very busy, and almost too busy for me.  I honestly am feeling pretty overwhelmed.  There doesn't seem to be much that I can do to change the situation, though, so I am really trying to just concentrate on one day at a time.  It seems like I can handle a half day of work and then rest so that I am prepared for the kids to come home from school.  The harder part is as the day wanes, I wear out.  So evening activities are a challenge even though I really enjoy going to see the kids in their various activities.  But each evening seems to slow me down the next day and this week feels like I am struggling to keep going.  One of those things I just need to deal with knowing that it will gradually get better.

Saturday

Busy, busy week!  Whew, I can't keep up!  :)  But I am here and so thankful for each moment, even if I am absolutely wiped out by the evening.

Last night was a beautiful choir concert that Tanner participated in.  Tonight Kyle and I still went to October Baby and what a treat that was!  I highly recommend seeing that movie, but it is a tearjerker!  It was a treat to go to a movie even though I am pushing it a little harder than I probably should.  The bed is calling my name pretty loudly right now!

Thursday is the ultrasound.  I'm not counting on finding out anything that day, although I am sure going to try.  I will send a copy by cd to Johns Hopkins and the oncologist will read it and give me the final answer for the next step.  It would be such a blessing to not have to have another surgery but we will just take it as it comes.

Wednesday

I am feeling a great sense of relief!  I had three big things that I had to get done after getting home for work and I did the last yesterday!  It was a big day for me because I had to drive an hour from home and do a continuing ed test that lasted about 2.5 hours.  I passed!  I have such a feeling of relief that these things are done and I can move on to other things.

One of the harder and sadder things for us is that one of our employees is leaving us.  She has worked for us for two years.  Replacing her is going to be difficult but we plan to replace her with a part time person.  After all of the medical problems I have had, I know that this is a hurdle but one that we can deal with.  At this point I am looking pretty short-sighted and just concerned about the results of my ultrasound.  If I do need to have surgery again being short in the office means that Kyle won't be able to come with me so we will have to figure out how to make things work.  We will just take it a day at a time, though, and I know that the Lord knows how things will play out.

Easter!

What a wonderful day to celebrate the resurrection of our Lord!  It has been such a blessing to be able to enjoy the day with family and feel good while doing it.  I remember so many times of either missing all together or struggling through the day in pain.  It is even greater to focus on the sacrifice that our Lord made on my behalf.  I am so undeserving.

I continue to think about how very blessed I am!  Each day that passes gives me more confidence that perhaps I will continue with minimal head pain.  I am enjoying each day! I can tell that my strength is improving, but it is very slow.  It is just so nice to be moving in the right direction, though!

We are still amazed and honestly, quite surprised by the continued outpouring of love to us.  It never ceases to amaze me to hear from so many that have been praying for me and my family!  We have received financial support that we don't deserve and such encouraging notes.  What blessings we have so unexpectedly received!  Thank you!  I haven't sent out personal thank you's and feel guilty about that. But I hope that each person knows how much we have appreciated the prayers and other expressions of love that we have received.  God is so good!

Wednesday

Again, no news is good news!  I am so thankful for how well I am doing.  Obviously I have a ways to go but I am happy with where I am at and can see that I am making progress.

Life stays busy for all and that is true of our family as well.  Today I had a mandatory meeting to go to for work and I made it through the whole thing pretty well!  I have another next week and I will be thankful to know that my list of required things to get done is growing smaller.

I am beginning to think a little more about what will be happening in the next while.  I have the ultrasound scheduled locally for April 19.  The results of that will determine whether I will need to go back to Baltimore and have another surgery or not.  There was another "spot" detected on the ct scan that can't be seen on the ultrasound that I will need to get checked out, too.  It was described as a possible abscess but was not seen well because it was partially behind the cyst.  There is an 85% chance that I don't have cancer, which is a relief.  However, I have been in the less than 1% with a few medical problems already so I know that I am not totally out of the woods.  It will be good to know what to anticipate.  Nothing would be the very best!  We'll see. . .

The next issue we are contemplating is if I do need surgery, when it will happen.  I've waited this long, so we are hoping that if it is necessary that we can wait until the end of May.  There are many kids programs and nephew graduations, etc., that I would like to feel well enough to attend.  So having surgery the beginning of May doesn't sound all that attractive, but we'll see how it all goes.  One day at a time.

We are all so thankful for all of the good days that I am having and feel so blessed.

Saturday

No news is good news at this point.  I continue doing very well.  My headache is staying mild.  It is very hard to not overdo it, and it doesn't take so much for me to overdo it!  But I am enjoying "normal" life things.  This morning, I was able to attend an event that Kylie participated in with a solo violin piece that was judged.  What a blessing to just do some of these things!  I did a few things the rest of the day in the house, but am really quite exhausted.  It seems like I can pick out one "bigger" thing for the day to do, then I have to lay low the rest of the time.

I continue to be amazed at how well I am doing!  I can tolerate more noise than I have in some time.  I feel like the "real me" is back.  I hope I stay around for a while!  :)

Wednesday

Today has been another good day.  I am just about giddy experiencing life with a mild headache.  What freedom that gives!  My strength is slow in returning, but I am making progress.  Today I spent most of the morning in the office and I did pretty well.  I will continue to move slowly and take things one day at a time.  It has been about 4 weeks since the most recent of the surgeries.

Monday

I am thankful that I have made a few more accomplishments!  Today I spent a couple hours at the office this morning and I went to the grocery store with Kyle tonight for the first time in a long while!  These seem like tiny steps, but they are steps in the right direction.  Saturday I had a marathon day, going to S. City to do a little bit of very needed shopping for the kids.  Kyle and I went with three of the kids and we were able to hit two stores and get what was sorely needed.  Even feeling really good this would be an accomplishment and so I was pretty happy that we were able to get some of this done.

This afternoon I spent a few minutes looking back at the posts that were made on this blog for the end of February and March.  Things were looking so difficult and I was having a hard time bracing for a very miserable 8 weeks without the shunt.  What an answer to prayer that I am doing so well!  I have so much to be thankful for!

Sunday

A great day!  I was able to attend church twice today and that was wonderful!  What a blessing to have that opportunity.

My head continues to do pretty well overall.  I still have a headache and the sensitivities, but not nearly to the extent that I have had in the past.  I can tell that I have a little ways to go mentally, but that is coming as well.  My eating is back to my  normal, which is nice!  I still have to be careful but that has been the case since having pancreatitis and I don't think that will change.  My head hasn't fully adjusted to not having a shunt or maybe it is just a problem that I will always have, but if I stand from sitting or laying I almost have a short dizzy spell that resolves pretty quickly.  I have to be careful, though, because if I move to quickly things will go black on me even though it isn't a faint.  Hopefully that will gradually improve.

I have so much to be thankful for and I continue to be thankful for the support shown to our family.

Thursday

We continue to shed a few tears and talk about what an amazing experience the tip night was Tuesday evening.  We weren't sure how to handle things when we found out that this was planned and advertised before we knew about it.  We have found that it is easier for us being the giver than the receiver but we were so blessed by receiving and I thank everyone for that!

A special thanks to my sister, Tami, for surprising us with this!  Thank you to our families, youth group and youth group sponsors, Hinton folks and many others for working so hard at the Pizza Ranch that night!  Thank you to so many that came--this event broke a record at the local Pizza Ranch for a tip night attendance!  Thanks to those who couldn't come but showed their support anyway.  We thank everyone that has prayed for us, encouraged us, helped with our kids, brought us meals and so many other ways of showing their love and support.  This journey would be so much more difficult without our Christian community surrounding us.

Today I finally talked to the oncologist office at Johns Hopkins.  As I feared, their plan was to do the ultrasound and have an appointment with me but if needed, the surgery wouldn't occur for two weeks or so.  I decided and they concurred that I will have the ultrasound done here and then will send it to them.  They will review the results and determine if surgery is necessary.  If it is, the surgery will be scheduled and I will fly out there to have that done.  The ultrasound will be done mid-April.

Amazing

This is precious!  Thank you Nicole!

I have been delaying writing this blog post.  How do we say thank you?  I really don't think that anything that I can write or do would ever be sufficient to express our thanks and amazement at the overwhelming support and love shown last night at the tip night.  I will readily admit that I have shed many tears about this entire tip night event.

First, when I found out that it was happening I had a hard time talking about it to anyone because I didn't expect it and was surprised that so many wanted to do this for us.  Now I am even more overwhelmed after seeing a huge crowd of people come on our behalf.  I have felt so lonely many times while struggling with this and I now know that I am not on my own.  Thank you for such a precious gift.  I will never forget this.  Ever.

Jeremiah 31:13b
I will turn their mourning into joy;
I will comfort them, and give them
gladness for sorrow.

Psalm 13: 1, 5 & 6
How long, O Lord?  Will you forget me forever?
How long will you hide your face from me?

But I have trusted in your steadfast love;
my heart shall rejoice in your salvation.

I will sing to the Lord,
because He has dealt bountifully with me.

Monday

The reality of family life hit hard today!  Tara had a doctor appointment first thing this morning which Kyle & I both went to and then Tanner had an appointment with a specialist for more foot problems that ended up taking about 3 hours--mostly waiting time.  I went with Tanner as well, which was exhausting even though I did nothing.  Today is laundry day(s).  Oh, my.

Tomorrow night is the Pizza Ranch tip night.  We are so humbled that my family surprised us with this event.  The additional expenses have been high with two plane tickets each time, often purchased last minute, hotel rooms, etc.  But I think beyond the financial assistance it means so much to us to know that people care about us and that they are prayerfully and thoughtfully supporting us.  So many blessings received during the hard times of life.

Have a blessed Sunday

I made it to the musical all three nights!  In all honesty, the last night was pushing it a little but I made it.  What a joy!  What a hard working, talented group of kids and teachers to pull off that musical and to perform it so well!  Wow!

This morning I was still paying for the activity of the previous evening so I didn't make it to church, but I had the privilege tonight.  Pacing myself is a difficult thing because I want to do everything and my body isn't following along.  Not surprising, but another lesson in patience for me.

On a lighter note, I counted the number of fresh incisions I have right now and there are 8.  Three on my head, one near my collarbone and four small ones on my abdomen.  Pretty pathetic that I had to count them.  My hair is starting to grow in although it is only like 2 or 3 millimeters long.  I have a long ways to go on that! Having hair is one of the things that I have learned is a minor part of life.  Having a bald head does tend to attract some interesting looks, though!  I am wearing a scarf or cap when I am out of the house at this point.  I have learned that there are many things much more important than hair.  My priorities have certainly changed.

Friday

I have so much to be thankful for!  Yesterday I thought about what I should write about on this blog, but I was a little overwhelmed and for once :) short on words.  How can I express our thankfulness for the love and care of so very many shown to our family?  I just don't know, and words don't cover it.  Tears have run down my face so many times as I am shown one kindness after another.  Thank you!

Being home is such a blessing and wonderful.  As usual and as expected, it is quite overwhelming again but I have experienced this many times and know that it is just a process and it will get better.  Last night I had the privilege of watching the musical presented by our high school  I can't even express how much it meant to me to be there!  Everyone did such a fabulous job!  What a bunch of talented kids!  They presented the Music Man and Tanner was part of the barbershop quartet and Kylie played her violin since it was all presented with live music.  I am so proud of my kids and of everyone part of that endeavor!  It was impressive!

My plan today is to take it very easy, take a nap this afternoon and try to go again tonight.  Last night went pretty well.  I wore my earplugs during almost all of it, but it was amazingly doable.  A few months ago I wouldn't have been able to tolerate the level of sound and I did last night so that is a great sign.

There are a lot of questions about the shunt and if it will need to go back in.  At this point, our hope and prayer is that I can live without it.  Doing as well as I am right now without the shunt is truly an answer to prayer.  In December when the tubing was externalized my pressure was to high 24 hours later.  Then when it was externalized again in SC they shut it off blindly--meaning I didn't know if it was off or on and within a few hours I didn't feel good  and knew that it was off, which they confirmed.  This time when it was taken out I didn't have that happen.  I don't have a medical explanation for that or that the recent spinal tap a week later was normal.  When I contrast the last few months with the shunt on and off with the period of time when the shunts were put in originally it is amazing.  At that time when the shunts became obstructed I was not functional.  I had a difficult time even being home in my bedroom with the door shut and handling the kids talking in the next room.  What an answer to prayer!

Overall I have a ways to go.  My head isn't perfect but it is tolerable.  I am very weak and physically worn down after having these 5 surgeries in the last 2-3 months.  But I have a great deal to be thankful for and will continue just taking one day at a time and appreciating each good day that I am given.

Wednesday

I am home!  What a blessing!  The trip went well but was more exhausting than I anticipated.  It seems like when I am in a quiet room with a very controlled environment I did fairly well.  It is entirely different being home with four kids and a husband!  There has always been a period of adjustment to being home and in the middle of a busy household, and that is happening again.  I knew it was coming but it is impossible to be prepared.  But what a blessing to be here!

Tuesday

A couple of days ago I was lamenting about not being home for the musical, for Kylie's birthday, etc.  The Lord has been so good to me!  We are flying home tomorrow, on Kylie's birthday.  What a surprise from what our expectation was!

I continue to do pretty good.  Yesterday a neurologist that I saw here in June called me and recommended doubling the medication that I have been taking in hopes of helping to control the constant headache.  I am really hoping that it will keep things tolerable but he said to call him if it wasn't controlled well enough.  My abdomen continues to ache but it is definitely much more doable than the head pain can be.  Today my head hurts a little bit more, but still tolerable.

Ultimately, I am just so hopeful that this may be near the end of so many health struggles.  I will have to have the mass removed in 6 weeks if it is still there, but that will probably be same day surgery and that might be it!  That almost seems to be to good to be true but I so hope that it is!  It has been nearly 6 years that I have been struggling with my head.

Monday

Oh, happy day!  We saw the gynecological oncologist this morning.  He feels that it might go away!  The blood test showed the cancer marker as negative, and that is 85% accurate.  I don't have that cancer in my family history, which is another plus.  So he felt very safe in waiting to do anything.  They want me to come back in 6 weeks to do another ultrasound and see what this mass has done.  If it is still there, I may have to have it removed.  He is hoping that it might be gone!  We have so much to be thankful for!

The Lord always answers prayers, and I know that.  I was afraid the answer may once again be no.  We are so very thankful that the answer was yes this time!  It appears at this point that I may be walking toward health!

Sunday

Today has been another relatively good day.  The emotions of being here yet for another undetermined length of time is hitting me harder today.  I so desperately have wanted to be home this week and now that is looking more questionable.  Kylie's birthday is on Wednesday, so hers will be the second birthday I will miss on this trip.  Tanner & Kylie are involved in the musical this weekend and it just kills me to think about missing that.  The privilege of attending my children's events have been few it seems the last years and that just breaks my heart.  This is a big one and I have been so determined to be home!  Please pray that it may still be possible.

I have been doing some reading and it sounds like a biopsy would probably be performed during surgery and they would determine the results within 30 minutes and then proceed with the necessary surgical procedures based on the findings.  If it is benign, it may be possible that it is same day surgery although my body is weak and worn so that may not be quite as likely for me.  We are praying diligently that this is not cancer and that I may be allowed to begin recovering my strength and resume life with my family.

Please pray for my dear family.  Kyle has been such a loving and supportive husband, but he is overwhelmed and has his hands very full.  Our kids are doing okay as having mom in the hospital, having surgeries, etc., has become rather normal in their young lives.  But they are struggling and really need to have their mom active in their lives.  One of the kids has been particularly affected in many ways and needs a little more stability with my presence than getting.  These things are so hard and complicated.  My parents are separated with my mom here and my dad alone.  My continuing illness has taken a toll on both Kyle and my families in many ways with much help coming from all.  I so long for health and normalcy for Kyle and I, our kids and our families.

I am spending another Sunday away from home.  We spent a quiet day, listened to a couple sermons and sat outside in the sun.  We had the joy of having Harry, Dori and Jess visit this afternoon.  Such a blessing.

We have also been blessed with the friendship of a young man from Saudi Arabia here treating for a severe lupus.  He has visited and been so kind, even walking with us to the market yesterday to get a few groceries.  It is so nice to have someone right here that cares about us, visits with us and is so willing to help when we need it!  Please pray for him as he undergoes chemo again tomorrow.

Someone will write tomorrow after we find out more about the path we will be taking.  A blood test was done at the ER that is 85% accurate in determining ovarian cancer, so we hope to find out the result of that tomorrow as well as finding out if/when I will have surgery.  I appreciate your prayers on behalf of my family and I!

Saturday

Yesterday was such a good day!  I seem to experience a residual effect from the Toradol shots that makes my head feel clear and good and it lasted all day yesterday!  Today is still good, but not as good and I can feel the headache gradually increasing.

We are spending a relaxing weekend here.  Our only hope today is to get a few groceries to tide us over a little while again.  My goal is to just continue gaining strength for what is ahead.

It sounds like I will have to have surgery to remove this mass regardless of whether it is cancerous or not.  If it is benign, the surgery will be smaller than if it is malignant.  The ER made it sound like that would happen fairly quickly.  The irony of all of this is that I just had a female physical in January and it wasn't noticed.  Then I had the ct scan the end of January where it showed up but the doctors didn't mention it.  I am thankful to be here where they didn't blow it off.  According to the ct scan in January, the mass was about 4 cm and it is now 5-6 cm, so it has grown.  It is considered a complex cyst which makes it more concerning than the typical ovarian cyst.  The doctors were serious about it so I am not blowing it off but just choosing not to worry about it right now.  I suspect that the pain was worse when the shunt was in because the tubing was hitting it and causing some strong pain.  Now I would consider my abdomen uncomfortable but definitely tolerable.  Every once it a while, I will have a really sharp pain in the left side that lasts 30 seconds or so but then it melts away.  I notice it the most when I have to lift my left leg--that hurts.  So getting dressed or putting on socks and shoes, for example, can be more painful.

Friday by Cindy

Well, Johns Hopkins is a great hospital, has great doctors, nurses and staff, but we found their emergency room a bit frustrating!  We were there for 14 hours and were able to crawl into bed last night at 4 am.  Exhaustion!

The findings are not all that encouraging but far from definitive at this point.  I have an appointment with a Gynecologist/Oncologist Monday morning at 8:30.  They did some blood work and an ultrasound and gave me an iv during those 14 hours.  Efficiency isn't the name of the game in an ER!

The primary concern is a mass on my ovary that is large and complex and that has probably what has given me the abdominal pain all this time.  It actually was documented on the ct scan in SCity hospital when I was there a few weeks ago but the didn't say anything about it to us but my neurosurgeon found it on the report.  It has grown since then. Less pressing is a much smaller separate nodule that we know much less about and seems to be not as pressing but is a concern.

Honestly, I am not hugely concerned at this point.  I have dealt with so much and maybe I can't fathom having something else added to it or maybe I am just an illogical optimist.  Whatever it is, I am just taking it a step at a time and we will deal with things as they come.  The positive is that they gave me a Toradol shot in the ER which typically has a positive impact on my head.  I was pretty miserable yesterday and am feeling pretty good this morning despite little sleep!  I am sure it will hit me soon and I will sleep a few hours this afternoon.  We are waiting for a consult with a headache specialist here to see if there is a way to manage the headaches without shunts since it is looking like that chapter of my life may be done!  :)

Friday AM

Cindy got the ultrasound done late last night and got back to her apt. around midnight.  The mass around her ovary will need surgery to remove it but they want a biopsy first.  Today she is hoping to have an appt. with the NS and possibly an OBGYN.

Thurs Night

Cindy waited for 5 hrs in the ER to see a Dr.  Now they want to do an ultrasound of the ovary area where this cystic mass is located.  Hopefully it won't be another 5 hr wait time.

Thurs Afternoon

Cindy's spinal tap was done and the opening pressure was an 11.  The last pressure was a 20.  She got her stitches removed from her head.  The CT scan of her stomach looks like there is a Cystic Mass in her stomach and she was brought over to ER to see what will be done.

Wednesday

Well, I saw the infectious disease doctor today.  What they found was actually not infection but a "contaminant" that grew on the culture.  The felt that further treatment for infection was not necessary.  So disheartening.

We came back and I slept for a few hours while my mom spent time at the neurosurgeon office.  Since my abdomen still hurts, they ordered a ct scan tomorrow morning.  Then I am having a spinal tap :( and after that I think my stitches in my head and by my collarbone will come out.  It seems that my head is gradually getting worse.  Today has been the day that I can see that I am declining in that area, which is so discouraging as well.  We'll see what the pressure is tomorrow, though, before speculating further.  I am just not feeling good but perhaps that is due to the pressure.  I don't know.  The thought of yet another surgery to put the shunt back in just sickens me.  But again, I am crossing bridges that I am not up to yet so I will leave it at that.

I am discouraged.  But God is good, all the time.

Tuesday

We finally have a bit of an answer after some effort!  :)  Kyle went there first thing this morning to find out that the doctor was gone until 3:00 and I left a couple messages.  We were supposed to get a call by 1:00 but my parents stopped where the P.A. that was supposed to call was at a little after 1:00 and then found out the answers.  The communication could improve, but the doctors here are really the best.

At this point, I know that I do have an infection--not a big surprise.  Thankfully, though, my spinal fluid came back clear so it isn't in my brain.  I have an appointment with the infectious disease doctors tomorrow morning and they will be telling us the next steps.

Kyle flew back home today.  :(  My mom is staying here with me now, though, which is a blessing.  My dad left this afternoon so it is back to just two of us again.  It was quite critical that we have an action plan with the doctors because we were going to be required to move out of our place in the morning if I didn't have an appointment.  I will still need to get many stitches out of my head and by my collarbone sometime this week.

I still just don't feel so good.  I am so exhausted that I really do little at all and even that is exhausting!  I am beginning to have some pain in my abdomen again, which I suspect is the infection.  So we will see what the next days will bring.

Monday evening

Just a quick note to say that we didn't hear from the doctor today.  Kyle is going to walk down there first thing tomorrow morning and see if he can see the doctor or get an answer as quickly as possible.  His flight leaves in the afternoon and he is to be picked up from where we are staying at 12:15.

Monday

We still wait for answers from the doctor.  We need to find out if it was an infection, what type and how it is to be treated.  Until we know those answers, we don't know what the next weeks look like.  The most frequent question that I am getting is how my head is.  Oh, what a hard question to answer!  I have a headache, and it is stronger than it was prior to the shunt being removed.  My biggest question is, can I live like this?  I don't know yet.  I just don't know.

Besides the headache, I have other head pain that is difficult to distinguish from the headache.  I have three pretty good sized incisions on my head that are stitched shut.  Under the incisions at the front of my head I know that after pulling the catheters out of my brain he put small titanium plates over the two holes in my skull to provide some protection there.  That is good because I lightly bumped my head there one time and it nearly knocked me out with the pain.  My head hurt for days afterwards.  But I think now there is some additional pain there where these plates were installed.

My parents came in yesterday.  It was so good and comforting to see them.  Without knowing what my doctor has to say, right now it looks like Kyle will fly home tomorrow, my mom will stay with me and my dad will drive home.  That could all change, but that is what we are thinking right now.

I continue to be extremely fatigued.  Kyle is taking good care of me, making sure that I am getting my medication and things that I just don't remember.  Right now I am just taking Tylenol for pain and a daily med that helps with the management of headaches.  I've been taking 1/2 a sleeping pill sometimes just to ensure that I sleep well.  I have stronger pain medications, but they seemed to be the culprit for my nausea so I just decided to quit taking them.  Sometimes pain is easier to deal with then nausea.

Tanner surprised me with a precious gift yesterday.  He is a member of the Knightsounds and they recorded the hymn, "It is Well" and he sent it to me by email. It is my favorite song and has been for a long time.  Tears just ran down my cheeks as I listened to it yesterday.  What a blessing!

Saturday

Another day is nearly done.  We had such a nice day today visiting with Kyle's sister Melanie & her husband Bob and later with Harry and Dori.  What a blessing to have friends and family around to encourage us!  My parents are gradually making their way here as they make deliveries for their business.  They had hoped to get here tonight but due to a few delays with the tornado weather they won't quite make it.  They have made their last delivery but are going to get here tomorrow morning.

I am doing okay.  The weakness is hard to accept again and I become fatigued so easily.  I took an hour nap after our company left today.  I know that this fatigue is normal but it is discouraging all the same.  Normal, boring, everyday life just looks so appealing.  I look in the mirror at this bald lady with dark circles under her eyes and I sometimes wonder who I am and who I have become.  Can I just wake up from this bad dream?

My head is okay.  I have a headache and it seems like it is very gradually worsening but it is not nearly as bad as I anticipated that it would be.  If I compare now to the point that I had the shunt first installed there is no comparison.  At that time, about 12 hours after a spinal tap I would be in absolute misery.  I had the spinal tap on Tuesday and I am still not miserable.  So the question we have yet is could I live without the shunt?  That would be such a blessing but I think more time will need to pass before we could make that decision.

Our kids are doing well and I miss them so very much.  I am so proud of each of them and am sad to continue missing important little and big things in their lives.  Right now I am really struggling with what to do with staying here.  I know and have no doubt that this is where I really should be for many reasons.  However, Tanner & Kylie have active roles in the musical mid March and it would just kill me to miss that!  Watching it on video would be okay but it just isn't the same as being there and participating in the excitement.   These types of things are what I dislike about my health issues the most.  But, God has a plan, and although I may not like it so much right now or understand it at all I trust that His plan is best for me and my family.  In the discouragement and a few tears, we continue to rest in that truth.

Friday

So I did stay in the hospital one more night but have been released and am out now today!  The night went well and the nausea seems to be better controlled.  It just feels so good to be out! 

The doctor stopped this morning and explained a bit more about the venous stent.  Evidently to be a candidate it had to be ocluded (or partially blocked) and mine was not.  It sounded like such a good possibility, but it is not to be.

Now we wait to see what the next step will be.  We think the doctor will call on Saturday but it could be Sunday or Monday before we hear from him.

Thursday afternoon

Kyle is taking a little walk outside the hospital because it looks like a beautiful day.  So I decided to spend a few minutes on the computer and write a little entry.  Kyle will laugh when he sees the word little, because I always write more!

Today hasn't been an easy day, particularly due to the nausea.  I have thrown up a few times today and we aren't sure what the cause is.  The anti-nausea meds that usually work for me aren't working so we'll see what they come up with.  We are leaning toward having me stay tonight yet for that reason.  If I get sick over in our room we don't have a lot of options besides going through e.r. and I never like that.  We'll see how the rest of the day goes, though.  We have a few hours yet to make that decision.  It is always hard for me to choose to stay in the hospital another night but Kyle will be weighing in on this decision and he will be more sensible than I.

The Lord has provided me a wise man for my husband!  I really do have many things to be thankful for.  Oh, how easy it is to see the glass half empty rather than half full.

Thurs AM

Cindy talked with the Dr. this morning.  From the results of the MRI - Cindy will not be a candidate for the stent -  so that option is ruled out.  She is going to be released from the hospital today.  The Dr will be calling us sometime this weekend when the results come back on the infection and that will determine how long we need to wait to put the shunt back in.  She is still fighting some nausea - hopefully that will get better as the day goes by.  One positive is that the pressure in her head has not been to bad yet without the shunt in her and the spinal tap was done on Tues. 

Wednesday evening

This is Cindy writing again.  Today has been the best day that I have had for quite a while.  The pain and nausea aren't as strong today, though, which is a blessing.

The surgery this time was much more painful upon waking than I anticipated.  I'm not really sure why, but between strong pain and nausea we've struggled to control, I have really struggled this time.  We've had so many encouragement along the way, though.  Thank you for the comments--which Kyle has read to me up until now--and the calls and texts and emails.  We have been encouraged in other ways as well.  The Christian community has been such a blessing to us!  It is overwhelming!

By the way, I do have a bald head again.  The doctor told me that a little more than half of my hair would be shaved--all of the front and most of the right side so I requested they take off the rest.  Hair is just not so important to me anymore, but it can be startling to someone seeing me at first, particularly right now with stitches all over my head!

My neurosurgeon stopped in this evening.  He will let us know tomorrow morning of the venous stent is a possibility for me.  That would be so wonderful!  We will know more on Saturday regarding the infection and what the long range plan is.  Probably the biggest question will be whether I should stay in Maryland until the next surgery or if I could come home and then fly back here again for the next surgery.  I suspect Kyle will fly back home on Tuesday regardless of what we decide that I need to do.  Please keep us in prayer as we make these big decisions.

The Lord has been faithful.  This hasn't been easy and I have had some pretty deep periods of discouragement but we continue moving forward and trusting that God is in control of all things!

Wed AM

The MRI did not get done yesterday.  They are taking her right now for that.  She is fighting some nausea and head pain trying to keep those two items under control.  The MRI will take a little time and hoping she will be back up in the room later this morning.  Hopefully by tonight we will be getting some answers.

Tues Afternoon

As the day goes by Cindy continues to improve little by little and head in the right direction.  We are still waiting for the MRI to get done this afternoon.  The spinal tap was done and all I can say is that they know how to do spinal taps over here.  I think we are going to hire the guy (Dave) to do all her spinal taps from now on.  Her opening pressure was a 20 which is a little high.  They took a little bit of fluid out and about an hour later she said she is could tell a difference.  Hopefully tonight or tomorrow we will here about the report of the shunt test with infection and how long she will need antibiotics again.  

Tuesday morning

Cindy called us late last night and was in alot of pain, very emotional and discouraged.  They had just gotten her into a private room and brought Kyle a cot so he could spend the night with her.  We've talked to both of them again this morning.  Cindy sounded much better than last night but still in quite a bit of pain.  They are going to do an MRI today to see if the venous stent would work and she is already scheduled for a spinal tap at 11:00, and she said she was just going to deal with that also.  The spinal tap is one of her least favorite things, a very painful and uncomfortable thing to have but something she is going to have to have quite often to deal with the high pressure.
We keep asking God why Cindy has to keep going through so much, she has gone through so much pain the last few years.  She just wants to be better and live a normal life.  We keep praying that this will be the end of her struggles.
Please keep her in your thoughts and prayers.  She loves to read your emails and what you write on this blog.  It's what keeps her going and encouraged in these difficult times.  So if you feel like writing to her I encourage you to do so.
Thanks for all your support,
Kathy