One Journey Ends and A New One Begins

I've been thinking about this position of starting a new journey.  I struggle a little with being defined in it.  Is it a journey of Widowhood or of Single Parenthood or is it a journey for my children of being 'Fatherless'? 

I suppose it is a little of each of those things.  However, though there may be those aspects in our lives, those things cannot be what defines us.

Who we are has not changed.  Yes, our circumstances affect us in various ways; but they do not change the essence of us.

Some of the unchanging facts are these: 

• We have a loving God - a Heavenly Father - who created each of us for a purpose.

• We belong to Him.

• He will never leave us or forsake us.

• If we let Him, He will guide us on this new journey.

We came to the end of that path called Cancer.

Now, we walk a new path; but we walk it in the same way that we walked the old path - one step at a time, living each day as God gives it to us -- and living it as best as we are able to do so.

I have no idea what this journey will look like.  I don't know what the future holds -- I never did; but God holds our future in His hands, and I know we are safe.

The End of the Path

The last several days were marked by consistent decline.  The delirium had returned.  Trent's overall condition was very much like the day I brought him to the hospital at the end of October.  (End in Sight)  There were also new issues that we did not deal with back then.

I let our pastor know.  I called family.  I sat with him - watching and listening.  I watched for signs of discomfort because he wasn't able to articulate what he was feeling.  I listened to his breathing.  I listened to his words, most of which stemmed from the delirium.  I tried to calm his frustrations that were coming from the strange messages his brain was sending him. 

Yesterday was definitely a more difficult day.  I knew we were incredibly close to the end.  I did my best to keep him comfortable.  The kids came for a brief visit.

I sat by his side during the night.  I dozed off here and there.  About 6:20 this morning, I was suddenly awake.  I knew.  Trent's suffering is finished.  He rests in the arms of his Savior.

I called my pastor, and we made plans for meeting with the kids.  There simply is no easy way to have that conversation, but it went as well as could be expected.  I am grateful far beyond words for the incredible support of our pastor and his wife.

So far today, it has been all about the details.  There are still many details to which I need to attend.

God has shown His incredible goodness and grace through all of this, including the timing and surrounding circumstances.  He is good!

Thank you so much for all of your prayers.

One Day at a Time

This past week was a little more difficult.  Thanksgiving Day certainly was different than any other holiday observance.  There were a few visitors and phone calls, but mostly, the day was quiet - quieter than usual since several of the residents were gone to be with their families.

The fact that it was a holiday week gave place to thinking about all of the changes that have occurred this year -- and those yet to come.

Of course, Thanksgiving marks the beginning of the 'Holiday Season'.  That, in itself, is hard to process.  I can't make plans.  At this stage of life, there isn't even a small degree of what can be 'reasonably expected'.  The best I can do is to formulate a few vague 'If / Then' scenarios.

Last week, Trent's wedding ring would no longer stay on his finger.  I asked him if he wanted me to wrap it with tape so it would stay on.  He handed it back to me and told me he didn't need it.  I had tried to mentally prepare myself for the fact that I would need to remove his ring at some point, but I was totally unprepared for him to hand it back to me.  It was hard.

Yesterday, there was a marked increase in Trent's level of fatigue and weakness. 

I think one of the hardest things I deal with is not knowing exactly where we are in this journey.  It requires me to continually surrender myself to the timeline that God has for us.

I've said it before, but it bears repeating:  The greatest comfort through all of the uncertainties that we have been through has been knowing, without a doubt, that God is in control and that He has a plan for our lives and that He loves us and will work His plan in His time.  Daily we see God's goodness to us.  He continues to provide for our needs and shows us His love through those who He has placed in our lives.

We appreciate your prayers for us as we continue our journey.

Thanksgiving

People are focusing on things for which to be thankful this time of year.  While I don't disagree that it is a good thing to set aside time to focus on the blessings and to be thankful, I do think we would all benefit from keeping that more of a continual practice than simply an annual event.

For me, the past several months have been just that -- a time to focus on and be thankful for the blessings.  I believe the Lord started that work in my heart before Trent's surgery.  When I wrote my original post about this journey that we've been on, I told how I had thanked God for His Love, Care, and Total Control the night before the surgery and how I felt impressed to do the same the night following surgery.  (New Path)

All along this journey, God has shown me His Goodness.  Focusing on the blessings allows me to have that Peace that passes our human understanding, and then my spirit can rest in His Care.  This has been a continual exercise.

My dear friend Valerie visited with me today, and we talked about this.  I had mentioned that I have to continually surrender to God's plan and His timing in all of this.  She asked me what process I go through in doing that.  I'm not very good at putting things into words, but the best way I can explain it is to say that I have to turn my issues (worries and stresses and concerns) into thankfulness. 

~When I am feeling crushed by the weight of something I have to deal with, then I thank God for His Strength and Grace for each situation.

~When I become overwhelmed thinking about the future (near or far), I have to stop and thank God for today - for that moment.  I also thank Him for having a plan for our lives - individually as well as collectively.

~When I struggle with the fact that I can't meet everyone's needs all of the time and I feel so inadequate and when my youngest tells me he wishes I were more than one person so I could be two places at once, I have to thank God.  I thank Him that He IS enough and that He IS everywhere all at the same time.  I thank Him for the people that He has placed in our lives to walk along side us and meet some of those needs.

~There are too many aspects to mention here, but so many of the burdens I have are lifted when I thank God for His Total Control over all of the details in our lives, and I ask Him to help me to rest in His Care.


I could never name them all, but here are a few of the things for which I am incredibly thankful:

• God, who Loves us, Cares for us, and Controls all of those things which we cannot control -- and Who never changes

• People who have cared for our children, provided them with a diversion from the weightiness of life right now, or given them stability and a sense of normalcy when life is anything but normal

• People who have brought food for our family and who have helped with yard work

• Friends and family, both near and far away who love us and who pray for us

• People we've never met who are praying for us

• Doctors, nurses, and staff who genuinely care

• Needs that have been met

• Good counsel

• Encouragement

• Peace

• Grace

A Time Like No Other

Little by little, I am seeing the confusion return. 

Trent sleeps more and more and, at times, is harder to wake from sleep to give him his meds.

Some days, the increasing weakness is very noticeable.

Some of the staff are concerned at what they see, but then they don't know what to think when I tell them that we've been through worse before . . . .

These are the things that are hard to watch.  I never know if I am seeing a temporary low or if this is a true decline.

I have no choice but to trust that God has a plan and that He will work it in His time.

As uncertain as each day may feel, it is comforting to know that God holds each moment in His control.

Each day truly is a gift. 

There were changes for the kids this week.  My sister needed to go home to her own family.  I chose to split the kids and put them in homes where I felt they would have the best fit.  They weren't sure about my choices when I told them initially, but they are doing well.  I miss them.  Seeing them for a few minutes each day is not the same as being home with them.  I know this is not forever, but it is still hard.

As hard as this phase of life has been, it has also provided opportunities for reflection that I would have been otherwise too busy to take.  I don't know if words will ever be able to adequately describe all that life is and has been over the past few months.  As I sit here next to Trent, I can focus on the blessings that we often take for granted. 

No matter the circumstances, it is beyond any doubt that we are blessed; and I am thankful.

Shifting Steps

This has been quite a week, once again.

Our transition to the hospice was not easy.  Almost immediately, we lost all pain and nausea control.  The staff there really didn't seem concerned with what was best for Trent.  They had their schedules and routines.  I had absolutely no trust or confidence in the 'care' they were providing.

Their spiritual care director got involved and the social worker got involved.  There were some changes made, but not enough to make me feel comfortable.  When Trent voiced his desire to go elsewhere, that made the decision clear.  On Tuesday, I had my sister come and sit with Trent for a couple of hours so I could go and see another facility.  The difference in setting and philosophy could not have been greater.  At the Lodge, they were amazed at some of the questions I asked and horrified that our experiences had made me feel it necessary to ask.

Jackie, the director at The Lodge, is all about getting things done, and - as promised - things were ready to move him within an hour.  Trent was, of course, exhausted by the move; and Jackie's first priority was to get him into his bed and comfortable.  After that was settled, then we focused on the paperwork.  We are back under Methodist Home Hospice - just as we were before Trent was admitted; and that means we are back with the doctors and nurses that are already familiar with Trent.  They sent a nurse out right away Tuesday night for a 'tuck-in check' to make sure that we had everything we needed for the night.  The intake team came first thing Wednesday morning.  Trent's doctor and his new nurse each came on Friday.

Trent has been so much more at ease here, and the pain is much better controlled.  The nausea is much better, but not yet where we'd like it to be.  Dr. Duane and I talked at length on Friday.  We are going to watch closely for a couple more days and then re-evaluate.  It feels so good to be working with people again who genuinely have Trent's comfort as their primary concern!

As far as the other facility, the social worker promises that changes will be made and that, as much as she hates what we have been through, our experience will enable them to force some changes that would have otherwise taken longer to make.  I hope that is true.

We had a dear friend drive several hours to visit this week.  It was a great blessing and encouragement.

There will be changes with the kids this week.  My sister has been here staying with them, but she has her own family who miss her and need her.  I know the kids will still be well cared for, but I see how all these things are affecting them.  So many times, I wish I could be two places at once, but I can't.

Through all of the changes and difficulties, we still feel blessed.  God has provided for all of our needs.  He encourages us and strengthens us.  He guides us and provides us with good counsel.  He blesses us with good friends and family - both far and near.  He gives us assurance that He is in control, that He has a plan, and that His way is best.  He gives his grace for each moment that we face.

Change of Venue

Today, I brought Trent to a hospice facility.

I struggled a little with this decision.  I first had to reconcile to myself that I would have to make this decision without his input.   I want to do what is best for Trent and what he wants.  Those 2 things don't always mesh.  I look at him and watch him grow weaker every day.  I think about the logistics of our house - tiny doorways and walkways, tiny bathroom.  I wonder how much weaker he will get before this is over.  Even if I can handle his care now at home, will I be able to if he gets much weaker?  Honestly, I just don't know.  I see how hard even a little bit of noise and motion are on him, and I know it is not realistic to expect the kids to be silent and still all of the time they are home.  There is also the factor that at home I am more than just total caregiver.   I am also Mom, and there are dishes and laundry and phone calls and clutter and homework, etc. - all while keeping things quiet and still.  When I am spread that thin, am I really doing anyone the good they need?

I know my kids need me.  Trent needs me, too.  I can meet my kids' needs and still have them feel secure using the help that has been offered to me.  Trent has requested that I be with him - that is what makes him feel secure right now.  His needs are for a brief season.  I have put much prayer into my decisions and have gotten counsel.  I know some people may disagree with my choices, but the fact is that I have to make the choices that I feel are best, and I am at peace with the decisions I have made. 

The plans were set in place yesterday.  The social worker ordered an ambulance transport, but when she said that, I saw a look on Trent's face that I really hate to see -- It was a look that tells me he feels things are being done to him rather than for him.  He also thought that I was sending him away and not going with him.  I stepped in and told her that I would bring him in our van.  She really never agreed with me, but it is my choice; and I want to do what makes Trent feel the best as a whole - physically, mentally, and emotionally.  Dr. Illig agreed with me, too. 

I have had to talk with Trent several times about this decision -- he doesn't remember many conversations.  I talked to Trent about the facility and told him I thought we should give it a try.  I talked about the fact that it is a little bit more like home - definitely less clinical, but offers advantages we don't have at home -- an easy-to-maneuver set-up and less busy-ness.  I did tell him that, if he really doesn't like it, we don't have to stay.  I felt badly because he really never agreed to this - I think he just resigned himself to it.

Even though he has had much confusion lately, he was surprisingly lucid this morning.  He could answer all of Dr. Illig's questions.  He knew where we were going and why.  He said to me, "So this is where I am going through the end of my life?"  Oh, how I hated to answer that question!  I answered that it did seem likely.  Then he asked, "Is that why you've been so quiet about it?"  I told him I had been quiet about it because, first of all I hated to see him upset about it; and the second reason is that I don't like to think about it because I will never be ready to say goodbye.

The emotional weight of the day has been great.  The conversations were heavy.  There was a great deal of finality in leaving the hospital.  I really have no words to describe the emotions of bringing Trent here.  Many times today I have cried out to God to strengthen me and to direct my focus and to rule my emotions.

I don't know that I've said it here, but I have told friends that this has been such a journey of trust and surrender.  Trust that God has a plan, that He will give the grace and strength that I and the kids (and the rest of the family ) need, that He is in absolute control.  Surrender of our plans, surrender to His will, and to His timing.  When I purpose to trust and surrender, then I can have His peace.  It is God's grace and peace that carry me through each day.

Slow Steps

Things have not changed a lot in the past few days.  There is no schedule for this time of life - and they tell me that is even more the case with a younger person.  It is just 'wait and see'.    I'm certainly not rushing things.

Trent had quite a few visitors over the weekend.  Some of them, he just slept through the visit, which is fine.

I was supposed to decide today about taking him home or moving him to a hospice facility.  I really felt like it was not the right time to make that decision.  I felt like I didn't have enough to go on to make it today.  When Dr. Illig found out how I was feeling, she said to postpone a decision until Wednesday when she is back at work.  I was thankful for that.

We did discuss, though, the fact that I would like a different Hospice nurse assigned to Trent if we do go home.  There have been a couple of things that weren't the best with this last one; but the biggest factor was that Trent was no longer comfortable with her.  I could work with and around her if I needed to do so, but Trent has to be comfortable with the person caring for him.  It was time for a change.

Trent's confusion remains - I'm guessing it will stay that way.  It varies in intensity and topic.  I wonder if part of it comes from the struggle with and against the reality of what Trent is facing right now.  I am doing my best to answer the questions he has as delicately and as positively as possible.  It is not always easy. When my answers don't satisfy him, he becomes more frustrated and upset.

God's grace is sustaining us through these days.  He strengthens us when we have no strength of our own.  He gives us amazing peace in a time that can feel so tumultuous.  I am thankful that I can trust Him with all of the aspects of life -- all of the things that are out of my control are completely in His control.  I am thankful for God's goodness.

When the End of the Path is in Sight

It appears that the end of this path may be in sight.  I don't like to look ahead to it.

This week brought changes again.  On Sunday and Monday, Trent was still recovering from the high doses of medication he had been given on Saturday.  We continued this week trying to manage the nausea and vomiting.

Wednesday night, Trent was insistent that he was going to church.  Considering how the day had been and how he was feeling, I thought he would give up on that idea.  He was adamant that he wanted to go.  I had my doubts as to his strength to be able to go, but since he was so determined, I decided I would do my best to make it happen.  We arrived late and left during closing prayer.  Trent was absolutely, completely wiped out from the effort. 

Thursday morning, Trent was still exhausted, and I expected that.

Thursday night things changed.  Trent went from his state of being sleepy and 'loopy' from the medication to being severely confused.  There was also a definite change in his eyes.  On Friday morning, he was still severely confused, but he was also unsteady and very emotional.

Trent was scheduled for more IV fluids on Friday, and he said he wanted to try to make that appointment.  We had his usual infusion nurse, Heidi, and she was visibly taken back by the change in him.  She started his IV, and we talked.  For some reason, the Hospice nurse was delaying calling me back; and that did not set well with Heidi.  Heidi got the Hospice nurse on the phone, and I could hear her as she told the Hospice nurse that she MUST get someone out there to evaluate Trent that day!  Heidi walked us out to our van and offered to step in if our Hospice nurse did not take action.

In summary, the nurse did come to the house and the decision was made to have Trent admitted for evaluation.  My biggest issue was wanting to know where we were in this.  The nurse had her opinion; down to the very core of my being, I felt differently.  I was glad we were going in.

Hospice admits directly, so we did not have to go to the ER or stand and wait in the Admitting line.  We arrived, and I brought Trent directly to the floor.  We were greeted by familiar faces.

The Lord worked things so beautifully!  Our regular Palliative doctor, Dr. Illig, 'happened' to be the one on call for the weekend, and she just 'happened' to be on the floor when we arrived.  When she saw Trent's name, she came right to us -- she was in our room within minutes.  Trent was pleased when he saw her.  We talked about what had been going on.  Then she asked me to step in to the hallway to talk.  Her 'gut' feeling is that we have entered an active end-of-life stage, and she believes we are looking at anywhere from hours to days.

I started making phone calls -- our pastor, Trent's dad and brothers, my sister, and one of Trent's best friends from college.  I made sure my sister was bringing the children up to the hospital.

When the kids arrived, I told them that Dr. Illig had been in to see Daddy and that she just doesn't know how much more Daddy's body can take because it has been through so much and had gotten so weak.  (The conversations you never imagine having . . . .)

Trent's parents and brothers were able to come to the hospital as well as one of his uncles and an aunt.  There were tears and prayers and serious things -- and even a little laughter.

Trent was so very tired, and I encouraged him to lie back and sleep.  He told me he didn't want to sleep because he didn't know if he would wake up.  I reminded him that he will wake up -- it is just a matter of whether he will wake up here with his family or in Heaven with his Savior.

I sat by Trent's side all through the night.  I dozed off a few times, but mostly I sat and listened to his breathing.

Today is a day of just 'sitting tight'.  We wait to see what the day will bring.  We feel loved by friends and family both here and far away.  We trust in our God and rest in His plan and in His peace and comfort.

Candid Thoughts

For the general public, I am an emotionally-reserved person.  Some people have said that I never cry or that things never bother me.  I even had one person comment that I had been totally unaffected by all of the events of this year with my husband -- nothing could be further from the truth.

I thought maybe it could be a help to someone else to know some of these things that I have gone through thus far.

• I am absolutely human in every way.  There is no item in my wardrobe containing a large S on the chest.  If there were such an item, it would be in the wrong home.  It is true that I am, by nature, strong willed and independent and a care-taker and a problem-solver.  But . . . just like anyone else, I have emotions, and I have 'limits', and my strength fails -- I fail.
• Some days, I do feel overwhelmed! 
• Some days, it feels too hard!  There are moments when I feel, "I can't do this!"  Later, I look back and feel so stupid for feeling that way because I have to do it -- it's not a choice.
• I don't want to do this!
• It hurts me greatly when people are harsh with me or my kids.  I already know I'm not perfect.  My kids aren't perfect, either -- I know that, too.  Yes, I absolutely want them to be well behaved and to obey, and I don't want to make excuses for bad behavior, BUT sometimes, I just want to say to people, "REALLY??  You can't extend them (me) just a little bit of grace right now?  Do you realize at all what we are dealing with?"
• It is hard when people distance themselves.  I know sometimes it is just circumstances.  Sometimes it is because they don't know what to say or do.  Sometimes they feel badly because their situation turned out differently than ours.
• It absolutely rips my heart out when people reference 'the natural progression of things' or the fact that things are 'just to be expected.'  I'm not in denial, I just really don't want to think about it all the time or have people talk about it.  The same goes for references to life on the other side of this situation.
• There are times I experience fear.  There have been some moments when that fear has resulted in feeling panic.
• I feel like a failure.  I can't do for my husband what I want to do - to fix it.  I can't do for my children what I want to do and feel I need to do.  Things have been set in place to do for my kids the things I can't do for them right now.  (Where is that shirt with the big 'S' when I need it?)  There are things that we have done as tradition that we can't do right now.  As much as I try to keep things as normal as possible, the fact is that I can't keep it normal because life simply is NOT normal right now.

My limitations keep me humble and remind me that I am not supposed to depend on my own strength.  I really believe that it is a matter of being purposeful.  I have to purpose myself to ask God for help - and then to accept His help -- sometimes that comes simply from His presence and His strength from within, and sometimes it comes from people.  I had an instructor in college who said to me one time that I needed to learn to be gracious and simply accept things from people some times.  I had another friend recently who asked me how I was doing with allowing people to help me through all of this because they know it doesn't come naturally to me to accept help.

When the comment was made (and it was said ever so kindly and appropriately) that help was being offered so others could do for my children what I could not do for them right now, it did hurt.  The fact is that what it hurt was my pride.  Pride separates us from others, but worse than that is the fact that pride separates us from and puts us at odds with God -- that's not a place I want to be.  I choose to lay aside that pride and be genuinely thankful for what is being done for me.

The times that I fail are really no different than any other point in life.  I have to ask forgiveness, do my best to make things right, and move forward.  Period.

When I am overwhelmed and it feels too hard, those are the moments when I must shift my focus upward.  I cry out to God -- it may be just a simple, "Dear God, please help me!" or "Lord, I need Your strength because I just don't have any of my own!"  I thank God for giving us today and try very hard to find blessings in the day and the moments. 

There have been several points in time when I have told the Lord that I don't want to do this!  However, my heart's desire is to live a life pleasing to Him.  So, I follow that statement with, "If I must walk this path, then help me to do so in a way that honors You."  I know that, if God has this path for me to walk, then He will give me the strength to do it if I just stay close to Him.

When people say or do things that hurt, I do my absolute best to just let it go.  I have asked for help in situations where a person just maybe needs to hear it from a different perspective.  In the end, though, my goal is to extend grace to people.  I'm not perfect, either, and I'm absolutely sure that I don't always say or do the right things.  We all need grace.  And, if, maybe someone truly was being unkind, well -- that's not my problem.  Only God knows a person's heart, and that is His place to take care of a problem there.

Even though it is hard when people distance themselves, I don't hold that against anyone.  I do understand that each person has their own set of circumstances they are dealing with and that it is simply too much at times to add to the burden they are already carrying.  One very dear friend admitted that they needed to distance themselves a little because it hasn't been too terribly long since they had a loss in their family, and our current experiences have caused them to feel that grief all over again.  I understand that.  I think it took a lot for this friend to open up about that, too.  It is a growing process for all.

The conversations about 'the natural progression of things' are sometimes necessary, I suppose, to some degree at least and from certain sources.  It doesn't make it any easier to hear, and it doesn't make me want to hear it any more.  It's just one of those really tough things about this journey.

The emotions are a very big part of this journey, and I know they will come in varying forms.  Fear is natural, but what I do with that fear is what is most important.  When I turn that fear over to God and replace that fear with trust, then I can have peace.  When I let the fears have free course, that's when the panic hits.   I do have questions about what the future holds, but I cannot let fear reign.  I told my husband a few months ago that I was confident that, just as God has a plan for his life, He has a plan for me and the kids, too.  I do not believe that God wants our lives ruled by fear, and it is an active choice to trust and not fear.

When I feel like a failure, I need to check my perspectives.  It may be that I have failed in an area that I can correct.  If that is the case, then I need to make those corrections.  Sometimes, though, those feelings are because my expectations are not what they should be.  Way back when this all started - long before we knew what we would be facing now - my dear friend Francie said to me that I would need to learn to accept 'good enough as good enough', that this is not 'normal life'.  There are many things I wish I could change that I simply cannot.  I am doing my best to balance the things I must take care of.  There are many things that I cannot take care of the way I would like to or the way I have in the past.  I don't have the time to spend with my children that I really wish I could, so I do the best I can to still make life enjoyable for them and to make the moments that I do have with them moments that really count.  Life isn't 'ideal' right now, but it is where God has placed us, and He has a purpose for doing so.  I want to learn the lessons He has for me, and I want to help my children learn about God's love and grace through this, as well.

It is true that there have been many tough moments along this path, but God's goodness has been right there, too, and there is much for which to be thankful.  I am thankful for God's grace and patience and forgiveness.  I am thankful for His ever-constant presense -- He has never left us alone.  I am thankful that He loves me in spite of my failures.  I am thankful, too, for those that He has put in our lives who have walked along side us in this journey thus far.  God has been so good to us, and I feel blessed beyond measure.

Maintaining the Course

This week was more difficult for managing symptoms than we have faced lately.  Over the course of the week, Trent's nausea and vomiting became less and less controlled.  We tried yet another medication which did not seem to help at all.  Trent had still been able to keep down his pain meds and so things were somewhat okay on that level -- until yesterday.  When the pain meds won't stay down, and we get several hours behind, then things start to spiral downward at a terrible pace.

I was thankful that my brother in law had arranged for the kids to be with another family for a few hours.  That way, the kids didn't have to see how bad off Trent got, and I could focus solely on trying to help Trent.

We tried several things - all to no avail.  I decided to call the on-call Hospice nurse.  She gave me instructions on using the concentrated liquid meds we had been given when we signed up with Hospice, and I did as instructed.  However, an hour later, he was still in agony.  I called back and she told me that she would be on her way to the house as quickly as she could.

She did arrive in a relatively short time, and she got right to work.  She said she was going to hit this hard with meds to get it under control, and then we would talk about maintaining.  Between what she had me give him an hour before and what she gave to him when she arrived, the concentration was many times more than what he would normally have, but it did get the pain under control. 

Once Trent's body had settled, she and I sat down to talk.  We are switching approaches to pain meds.  We are now using as few pills as possible and, instead, giving concentrated liquids.  Since the nausea and vomiting has been so hard to control, this approach requires less to actually have to go into the stomach and should, therefore, be less irritating.  I was also given much higher limits for the medications than I had been instructed to give prior to this point.

After all was said and done, the adrenaline level dropped, and I felt like I'd been hit by a truck.  The emotional and mental drain of the day was taking its effect.  I am thankful for God's strength to get through the 'crisis' moments.

As much as I had hoped we wouldn't end up in another 'pain crisis', I am extremely thankful for the benefits of Hospice care.  Without that, we would have been back in the ER, and possibly back in the hospital.  This way, I did not have to transport Trent anywhere, and we are home today.  I feel blessed.

Trent has been pretty out of it today - I fully expected that knowing how the one medication affects him and knowing how much he was given.  His head is a little more clear this evening, and that is good.  I just hope he was awake enough  this evening that he will sleep tonight.  I'm hoping the kids will sleep tonight, too. This Mama could use a decent night's sleep.

Psalm 4:8 I will both lay me down in peace, and sleep: for thou, LORD, only makest me dwell in safety.

 

A Strange Place

That is the best description of life right now that I can give.  It is a strange place.

I say that it is a strange place because there has been no other time in life that can really compare.  There is no 'point of reference' for walking this part of the path.  I'll be candid and say that there are times when it is very surreal -- It is hard to believe that this is actually where we are in life.

This is a strange place of trying not to live where we have not yet arrived, and yet still preparing for what seems likely to be coming.  When I think too much about what the future may hold, I quickly become overwhelmed.  When that happens, I remind myself to thank God for today and to ask Him to give me the strength I need for this moment.  I try to find blessings in that moment.  I don't know what tomorrow holds.  For that matter, I don't know what later today will hold.  I have to focus on living right now.

It is a strange time of waiting.  We are in a time where much of life doesn't seem to be moving forward, but rather standing still.  I'm not a fan of 'in-between times', but this is one I'm not ready to move beyond.  I'm doing my best to maintain where we are.

It is a time of strange perspectives.  Just a very short time ago, we wouldn't have called it a 'good day' if Trent were too sick or tired to go to work.  Now, it is a good day if he is able to eat something and is not throwing up, even when he is too weak to go anywhere.

It is a strange time for the kids, too.  Though we try to keep life as normal as possible, it isn't 'normal'.  The motion and commotion that comes with having 3 kids is sometimes too much for Trent to be able to deal with.  It is hard on the kids to always have to be quiet and slower than their normal pace.

This week, we turned over the responsibility of getting the kids to and from school to Trent's brother and sister in law.  Trent has had a couple of episodes of severe pain and nausea while he has been home alone and prefers not to be left alone as much as possible.  This has been hard on the youngest  -- yet another change.

We changed a couple of medications again this week, and we were able to get some IV fluids for Trent.  The fluids made a huge difference.  The doctor said that, if I think it helped, then he is willing to put in orders for more fluids as I think they are needed.  That was good to hear.  I have high hopes for one of the new medications -- I would love to see Trent get some relief and feel a little better.  He has definitely felt much better they past 3 days; and he was even able to go in to work for 2 hours yesterday.  He did have some kind of a medication reaction, though, this week.  I am in the process of trying to sort out which one - or combination - it may have been.  I think I may have figured it out and am testing my theory today and tomorrow, and I will see how things go.

We met the Hospice physician, Dr. Duane, this week.  He is very nice, and he spent quite a bit of time just getting to know Trent and where we are in this.  We also met our assigned social worker, Heather.  They each asked us, essentially, the same question -- "What do you see life like from this point forward?"  That's not an easy question to answer.  It's not something we want to think about too much.  We responded that we are doing our best just to live each day as it is given to us.  They were both surprised and pleased at our answer.  They said that most people enter Hospice care planning to die.  That would be a hard way to live.  I think I could sink into a state of despair pretty quickly if that were the focus of every day.  It is true that all of us face death -- our human bodies don't live forever, but I don't want that to be foremost in my thinking each day.  I choose to put my faith in God and trust Him with my future - with each of our futures.  I am choosing faith over fear.

Last evening, some men from church came over again to be an encouragement to Trent and to pray with him - to pray for us.  I am thankful for men who will do that.  I am humbled by their willingness to serve in that way.

So . . . here we are.  We are determined to live each day as God gives it to us; determined to see the blessings along the path.  We don't know what tomorrow holds, but we never did.  We place ourselves and our future in God's hands.  He will not fail us, and He has a purpose and plan for each step along this path; and for that I am grateful beyond words.

Blessings in Trials

I believe I've said it before, but I have felt challenged to focus on the blessings through all that we've been experiencing these past months.  Here are just a few of the many blessings along the journey:

• A pastor and his wife who have been such an incredible support and who show their love and care for our children in an amazing way
• An unrelated trial that has brought blessings now
• Nurses and doctors who truly care and have a compassion that makes all the difference
• The Hospice team that jumps into action so quickly in order to relieve Trent's discomfort
• Friends who come to visit to encourage Trent
• A friend who called me literally within 2 minutes of when I emailed him to let him know our current situation
• Meals that have been brought to ease our load
• For the many offers to help (even when I don't know what we need)
• For my God who I know has prepared our steps for such a time as this

For these things - any many more - I am truly thankful!

Contrary Winds

I have been quiet on here lately because our circumstances have been a bit tough.  I needed to get some things taken care of before I could share with people in general.

I will spare you all the details, but I will summarize by saying that Trent's care has been transferred to a Hospice team.

Our pastor met with us, as a family, to talk to the kids this week.  I explained to them that the cancer was growing fast and that Dad's doctors were concerned.  I told them that we would be having a "Hospice Nurse" come to the house and explained that these nurses are specially trained to help people feel as good as they can for as long as they can through the end of life.  I reminded them that God is still in control - no matter the outcome, and that He loves them so very much.  I told them I wanted them to know that, even though there will be tough days, they can trust that God will give them grace and strength for each step we have to take.  I reminded them, too, that no one knows how long any of us has to live, but that each day we have is a gift from God and we need to live it the very best we can.  As difficult as that conversation was to have, I really couldn't have asked for it to go any better than it did.  I am grateful, too, for a pastor who takes the time and makes the effort to make sure our kids know how much he loves them and cares for our family.

After we had talked with the kids, we talked to the rest of the family.  We then began letting others know, as well.

Thursday of this week was the day that we signed the paperwork for Hospice.  Trent was uncomfortable with pain, and he asked me to sign for him.  Some were no big deal, but some of those were papers I really did not want to sign.  And then there is the POLST order.  It ensures that, when the time comes, there will be no questions asked and no investigation, and it is to remain visible in the home.  A constant reminder . . . .

It was nice, though, how quickly the Hospice team sets things in motion.  Before we had even gotten the paperwork signed, our sweet nurse, Jenna, was on the phone with the Hospice physician asking for new orders to better manage Trent's pain and nausea.  Within 15 minutes, the medication orders were in and scheduled to be delivered by courier. 

Hospice offers several benefits.  It means we no longer have to travel to appointments and get prescriptions on paper.  There are no more trips to the pharmacy - not even for the over-the-counter meds like Prilosec or Miralax -- all of these items will be delivered by courier directly from the hospital.  It means much more aggressive treatment of symptoms and more liberal dosing of medications.  It means no more trips to the ER.  It means that, if he gets in another 'pain crisis', we will have immediate help at our fingertips.

The past couple of weeks have been intense emotionally.  There have been moments when I felt I couldn't go through what I was facing, but I have to remind myself of what I already know -- God will give me His strength when mine fails.  The weaker I am, the more He can perfect His strength in me.  My independent spirit doesn't like feeling weak.  The more submissive side of me knows it is okay as long I seek strength from the right source.

As difficult as some of the moments have been recently, I still know that God is in control and that He has a purpose for every part of this.  I want to walk this path in such a way that God's love and grace are allowed to shine through the circumstances, drawing people to Him.

Navigating

Last week was very different than we anticipated.

Monday was a tough day for managing pain, but we received the TENS unit that had been ordered and tried it out that afternoon.  The difference it made was amazing.  Trent felt good, and he even went to church that night.  He was just starting to feel some pain when we were coming home that evening.  I gave him his meds, and I thought he'd be able to get a nice night's sleep.  That was not the case. 

Shortly after he took the medications, he told me that he felt 'blah' and that his legs felt a little crampy.  He told me to go on to bed and said he'd join me in just a little while after he took a bath to ease his legs.  What actually happened is that he fought all night long with horrible pain, and he didn't wake me.  I heard him around 5 a.m. and got up to see what was happening.  He was literally beside himself with pain.  I asked him a few questions and watched him for a short time.  I decided we needed help, and I told him that I was taking him to the ER -- the 2nd trip in just a couple of days.

Even after they gave him medications there, it still took his body a while to settle down.  I prepared myself for the doctor to say that the pain had settled and they were sending him home -- I was ready to protest that.  Fortunately, I did not have to do that.  This doctor was very careful in his handling of the matter and took the initiative to contact both the oncologist's office and the palliative care doctor's office.  His decision was to keep Trent to make sure we did not have a repeat episode once we left the hospital.  I was thankful for that.

Trent's palliative doctor, Dr. Illig, was in his room within an hour of him being admitted.  She has been so concerned and compassionate.  I feel incredibly blessed by the doctors that we have been assigned.   Dr. Illig suggested that Trent was experiencing an opoid toxicity from his pain medicine and / or he reacted badly to the steriod that he had been on.  Without those two meds, he was feeling much better.  It was suggested to us that we talk with the department in oncology that provides the home-care nurses.  This department of nurses is licensed to provide 24-hour accessibility and they can call the doctors directly as well as bring medications to our home instead of us having to made middle-of-the-night ER visits because the pain is uncontrolled.  As much as I hope we don't have any more incidences of uncontrolled pain, I know it is a possibility.  It is something to consider.

We were in the hospital until Thursday morning -- we got out just in time to make his appointment with his oncologist.  This was the appointment to get his latest scan results.  The scan showed that there had been some additional growth -- nothing alarming, but growth nonetheless.   Trent is not making any changes at this point.  Dr. Kubiak discussed again the fact that there is a 'window of opportunity' for choosing chemo and that, once that window closes, it does not open again.  She shared with us her thoughts on that 'window'.  We meet with her again in 2 more weeks.  At that same time, we will meet with Dr. Illig again, and the social worker wants to visit with us again, as well.

We are still struggling with pain control.  Things continue the way they have been -- every time we think we have a plan, things change.  I continue to pray for wisdom as I help Trent make decisions and try to find solutions.  Yesterday was a rough day with pain again, but we were eventually able to get it under control.  However, last night, Trent was able to sleep 6 hours un-interrupted -- Truly a blessing beyond what words can express!

We have been offered the opportunity to place the kids in the Christian school this year.  Trent has decided that is what we are doing.  Big changes for everyone.  Two of the three are excited.  The third one wants to be excited, but he's not sure about the changes.  He'll come around.  The kids started school today, and I am eager to hear about their days.

Right now, I'm going to take a few minutes to just be.  No pressures for the moment.  I think I'll make a cup of coffee and have my quiet time and relish the moments of quiet.

Ebb and Flow

Ebb and Flow.  That really describes all of life, I suppose; but it is more noticeable during times like this.  The ups and downs, highs and lows, blessings and trials, the calm and the stress are all more prominent right now.

This has been quite a week.  We met with the Palliative doctor.  She was very kind and compassionate.  She spent a long time with us.  We came up with a new plan for attacking the pain; but with the new plan, there has been a transition time.  The transition hasn't been easy.  She told us it would take 3 - 7 days for blood levels to increase to where they need to be and then even out.  We were hoping for 3 days -- it seems that we're looking at 7 days.  About half of last night was spent in the ER trying to get relief.

It is hard to know what to do when it comes to helping Trent sometimes.  I want to do all I can to help him feel better, but I don't want to hover.  There are times when he will tell me what he wants me to do (or not do).  Other times, he is hurting too much or the meds have fogged his mind too much to be able to communicate effectively with me, and I just have to try to make the best decision I can.

We started school this week, too.  That has had its ebbs and flows, too.  One child plows ahead, one seems to be going along fairly willingly, and one is resistant.  I'm praying for some things to level off in this area, too.

Work had definite ups and downs this weekend, too.  I was unable to work last night due to being with Trent at the ER.  During my Friday over-night shift, we had a guest pass away.  Working at a hotel, I've always known it was a possibility to face that at work, but this was the first actual encounter.  I wonder if he had a relationship with God.

This coming week is filled with extra appointments again (plus school).  Trent has a new CT scan on Tuesday, and we will get the results on Thursday.  It is a strange balance to try to strike when thinking about the scans.  On the one hand, we try to be prepared for the results -- no matter what they may be.  We don't want to have the wind knocked out of us, so to speak, if the results are 'unfavorable'.  On the other hand, we don't want to speculate (or worry) about what they may be.  We know the results are in God's control.  We desire to rest in that knowledge.  It is an exercise in faith and trust to keep the mind from wandering too far . . . .

A new week.  Both old and new challenges.  One day at a time.  Ebb and flow.  Faith and Trust.

Plodding Along

More times than I can count, I have said that we are taking life, "One day at a time."    We really are doing our best to do just that -- to live today as God has given it to us.

In a sense, though, so much of life now feels like we are living in a holding pattern.  It seems we are always waiting -- waiting for the next appointment; waiting for the next scan; etc.  Right now, we are waiting for an appointment with the Palliative Care doctor.  I would like to see what options we can have for non-narcotic pain control.  Our oncologist said that she is well versed in narcotics, but beyond that is outside of her expertise; however, she agreed to give us the referral to the Palliative Care group so we could explore other options.  And so, we wait -- the earliest we could get in to see her is the 21st -- one more week.

Then, we wait for a new scan.  That is scheduled for the last week of this month.  After the scan, we wait a couple of days for the results.  Wait.

In this stage of life, there is a completely different perspective that goes along with the second half of Proverbs 27:1 where it says, "for thou knowest not what a day may bring forth."  We have to take each day as it comes, and not a moment before.  We never know whether we will be waking up to a good day physically for Trent or a rough one.  We don't know until the moments arrive whether his pain meds will be able to squelch the pain or if the pain will trump the meds. 

We are making plans for our days as best as we can -- always allowing for the unknown.  One of the plans we have laid is the starting of school.  We are scheduled to start next Tuesday.  The plan is to start light -- just three days the first week, and easy days at that; but then the plan is for a full schedule.  That may have to change.  To be totally candid, it isn't easy to follow through with this particular plan.  The thought of adding one more thing (and a big thing at that) to our daily life right now is a bit overwhelming.  I have to remind myself to just focus on the next step.

Right now, it is all we can do to plan for Trent's appointments, for work, for church, and for school.  Everything else has to be considered 'optional' -- a luxury.  It's just the way life is right now.

One of my children let me know this week that life isn't what they want right now.  Part of me wants to say, "Get used to it -- That's life!", but I know this season of life hasn't been easy on them, either.  However, the reality is just that -- This is life right now, and we can't change it.  We can only work on doing the best we can and to keep our focus on God and on what is good.  Said child and I discussed focusing on the blessings.  He came up with many negatives -- I tried to counter them with positives.  Even though some of our days may be rough, there really are so many blessings.  God has been providing for our needs.  We have good friends who give of their time to help us.  We have employers who have been more than understanding.  It is easy to look at the negatives, but it is so much more pleasant to focus on the blessings!

Tough Terrain

I tend to refer to this season of life as being a path.  When I think of a path, I think of something that - even if it is full of unforeseen twists, turns, descents and climbs - is well defined and relatively free of obstacles.  This is not that. 

What we are walking is rough and jagged.  It feels like each day - every step - holds a potential for harm.  This trail is full of rocks and potholes and the way is not clearly seen.

It seems that each time we think we have some aspect figured out -- some solution to an issue we're facing -- things change.

Trent's oncologist called to talk with me last week.  Though she may not agree with our choices, I do believe that she genuinely cares.  She asked me questions to better understand our perspective.  She shared her concerns and expressed her desire to be a help to us.  We meet with her for our next appointment this coming Friday.

My emotions have been in hyper-drive.  It is so hard to see him in such pain!  When there is something I can do to help alleviate the pain, it is easier for me to deal with; but when I am not able to do anything for him, the weight of the burden is multiplied.  I took the kids to hear a slap-stick comedy / folk music program at the library last Friday.  Who knew that such an event could cause floods of tears??  Keeping my Quiet Time with the Lord is essential to maintaining any sense of emotional balance.  Some days, it is hard to get that time -- Appointments so early that I can barely pry my eyelids open in time to get out the door to get there, the busy-ness of the day, trying to get even just the necessities done, and by the time everyone is settled for the evening, I have to fight to keep my eyes open.  As much as possible, I try for earlier vs. later.  There are days when I mandate that the kids stay in their rooms for a half hour in the middle of the day -- Mom's Quiet Time.  It is imperative that Mom has that time.

Recent events have caused me at times to try to envision what lies ahead.  I know I can't do so, and trying to is unproductive at best.  There is only One who knows what the future holds, and I purposefully surrender the future - and all its unknowns - to Him.  Whatever the days ahead may hold, I know God holds us in His hands.  He is working according to His Will and plan.  We are safe in His care.

Thoughts Along the Path

There has been much to think on over the past several weeks. 

*One of the first things that I realized was the great blessing of God's unchanging nature.  Just as God was loving and kind and in control before we received this diagnosis, he was still those same things afterward.  What we knew about our situation had changed.  What we knew about God's character had not changed -- and it never will.  Yes, I knew before that day that God's character was unchanging; but it was such a great comfort and blessing to be able to think on that attribute of God through all of the emotional weightiness of those first few days.

*Many times, a diagnosis such as this -- Incurable Stage 4 Metastatic Cancer -- is thought to be something that shortens a person's life.  I don't see it that way.  I believe that God has known before we existed the day we would enter this earth and the day we will depart.  I don't believe that this diagnosis changes the day that my husband will depart this earth.  I reference this stage of life to being a path.  Our lives will bring us each down many different paths.  We all have somewhat envisioned what the path for our life will be.  No one sets out planning that they will walk the path called Cancer; but that is where God has brought us in life -- and that is all that this diagnosis has changed -- the path that we had envisioned.

*God often does not reveal the 'Why'  for our circumstances, but we do have the promise of His grace to go on.  We must squelch the questions of 'Why' and focus on what God has for us through this.  I desire to learn whatever lessons He has for me, to allow Him to strengthen me, and to glorify Him in whatever lies ahead of me.

*God has given me incredible peace through all of the events recently.  I realized early on that having God's peace was a matter of choice.  God had given me undeniable peace going into this surgery.  Throughout that first afternoon and evening, it kept ringing in my mind, "Thou wilt keep him in perfect peace whose mind is stayed on thee."  (Isaiah 26:3)  As long as I kept my focus on God, I would have His peace.  It was a choice.  God had initially given me His peace -- He wasn't going to take it away just because we now had an 'unfavorable' diagnosis.  His peace was still there for me if only I would choose to accept it.

God's peace has been such a blessing and comfort -- like a soft blanket of love and peace.  Some people misunderstand that.  They mistake the peace for indifference.  I assure you that I am fully connected and deeply impacted by this entire situation.  It's just that God's peace has so completely enveloped my spirit.  I don't fault those who don't see it that way -- I know it is something that you have to experience in order to understand (to the extent that we can humanly understand it, anyway).  This is that 'peace that passeth all understanding', the 'peace in the midst of the storm', and as it has been said, "Sometimes He calms the storm -- other times He simply calms His child."  I am so thankful for His peace!

Simplicity

This is a point where simplicity is a blessing.

Life lately has been so filled with major life events and big decisions.  Even though some of those decisions are ones that - in the end - only Trent can make, as his wife, I am still a part of those decisions.  I long for simplicity.

Though the past few days haven't been totally uneventful, there have been no major incidents, and no major decisions to make.  For that, I am immensely thankful.  Something most people would consider to be so simple -- a day without major decisions -- has become a huge blessing.  I desire that simplicity, and I am thankful for the days it is a reality.

I am working hard at not letting the 'little' things put me over the edge.  Often, I fail in that area.  I find myself having to ask forgiveness and having to determine - again - to do better in that area.  I am thankful that God is "good, and ready to forgive; and plenteous in mercy. . . " (Ps. 86:5) 

One of the things I am doing is giving up some of the small decisions.  I usually don't enjoy making decisions -- especially when the matters are inconsequential.  (My husband loves that fact about me.  Um, yeah, not so much . . . . )  Constantly making small decisions can be very stressful for me when the stress or fatigue level is already high.  Giving up those decisions - along with the right to have an opinion of the outcome - is one of the ways that I am actively trying to lessen the stresses that have been getting to me.

I'm also purposely deciding to give up my feelings on the little things.  Does it really matter if someone takes a picture of me that I don't like?  No, but it can really get to me - if I let it.  Does it matter if my daughter, who is full of 'personality', decides on stripes and mis-matched prints for her clothing for the day?  Not most days; but the more stress or fatigue I'm feeling, the more important it seems.  I'm working really hard on 'letting it go'.  Even things that need to be addressed, I sometimes need to let go (i.e. not let it eat at me) until it is clear that the time is right to address it.

I'm determined to do these things - even though I fail much. I need to get these things in balance. I will keep working toward the goal. 

Passing Clouds

The clouds that were hiding the sun have dispersed somewhat.  There is sunlight dotted on the path in front of our feet.

My husband was feeling very conflicted after getting the latest scan report. The last thing I wanted was for him to make a decision because he was feeling scared or pressured.  When he relayed to me that the oncologist had said that she wanted to hear from him soon regarding his decision, the first thing I told him is that he doesn't need to make a decision right now.  I know there are times in life when we need to make immediate decisions, but I don't believe that this is one of them.  I knew what I felt he should do, but it isn't my decision.  I wanted him to have time to let the emotions settle and then make his decision.

After I got the word from my husband on the doctor's report, I felt the Lord speaking to my heart again with that familiar refrain, "Trust.  Just trust Me."  I am resolved to do that.

Yesterday, after meeting with our natural practitioner, Trent had made his decision.  He is going to continue what he is doing and wait and see what happens.  As soon as he made his decision, there was a visible difference in him.  His spirit was at peace.  He was settled.  That is so good to see! 

I was thinking this morning how this path has been filled with so many ups and downs.  My husband likens it to a roller coaster -- I see it as a path.  (We view life a little differently. ;-)  )  It is a path of peaks and valleys.  The past couple of days were a small descent in the path, and the skies were clouded.  Today, the skies have cleared a bit.  Only God knows what tomorrow holds, and I will trust Him that He is working this according to His plan and that He will walk with us every step of the way.

Overshadowed Skies

My husband has been experiencing more pain.  At first, we thought maybe it was a result of him doing more -- stretching those areas that were affected by the surgery; but the pains have increased and - at times - intensified.

We made the call to his doctor to discuss the situation.  After meeting with the nurse practitioner, it was decided that he needed a new scan to see if there was anything they could identify as causing the pain.

We received the phone call yesterday.  They aren't sure about the source of the pain, but there was some growth of the cancer that was noted.  The oncologist still thinks surgery is the best path.  Her next recommendation is chemo.  She wants to hear from us soon with a decision.  Not what we would have liked to hear.

We aren't sure what the next step should be.  We are praying for wisdom.

The light that was on our path has faded.  Our steps feel less certain right now.  I am certain, though, that God is still in control and that He still has a plan.  His plan hasn't changed, and He wasn't surprised by these results.  We will wait for Him to reveal more of His plan and follow as He shows us the next step to take.

Grace for Today

God gives us grace to handle today -- not to carry the burden of the past because those things are done, and not for tomorrow because those things have not yet come.

God also gives us grace specific to our situation.  My first lesson in this started many (many) years ago.  I didn't know I was learning a lesson at the time, but it is a situation that has influenced me to this day.

When I was very young, my best friend Craig had brain cancer.  I loved him very much.  God brought him home to Heaven the day after my fifth birthday.  I have only a handful of memories, but they are burned deeply in my memory, and each one is precious to me.

My lesson began with a conversation his mom had with me.  She sat down with me and told me that one day, Craig was going to go and live with Jesus and that when he did, he wouldn't be sick any more and he wouldn't have to go in the hospital any more and he wouldn't have the bandages on his head any more.  (I remember, as a 4 year old, that last one was important to me.)

As I got older, probably a young teenager, I would think back on that conversation and wonder how in the world she could have had the strength to do that.  I could never imagine being able to do something like that with the burden she was carrying.

As I progressed through my later teen years and into my early adult years, it became clearer.  There were things that came into my life that I could never have imagined I would be able go through.  I went through each situation one step at a time -- not because I am a person of incredible strength, but because of God's grace and strength.  God perfects his strength in my weakness  -- the weaker I am, the more God shows Himself strong. (II Corinthians 12:9)  God gave me light enough to see the next step and to keep moving forward.  God gives us grace for our specific situation.  I couldn't understand how Ronnie could have that conversation with me because it wasn't my situation to bear.  God does not give us the grace to handle someone else's burden.  I don't have the grace to carry your burden, and you don't have the grace to carry mine.  We each get the grace to go through our own individual set of circumstances.

Just today, I was reading in Cary Schmidt's book, Off Script  (http://www.strivingtogether.com/pages/Off-Script.html) where he said pretty much the same thing.  He said "From the outside looking in, that doesn't make sense.  But it's an up-close reality in the trial.  If you had asked me before cancer how I would cope with having cancer, I would have been unable to respond.  But in every moment of every day . . . God meets me there with just enough of His grace to get me through."  (p. 116)

Whatever burden you are facing today, remember, if you are God's child, He is with you every step of the way; and He will give you His grace to face your circumstances. 

Grace for today.

First Steps and Light on the Path

Those first days out of the hospital were days of adjusting.  We had to figure out exactly how we would set things up to be best for Trent.  The kids had to adjust to being back home.

My parents came for a couple of days to celebrate Nathaniel's 12th birthday.  They kept the kids at the hotel with them and we came and went as Trent felt up to doing so.

Healing was slow, but day eleven was the turning point.  We were seeing noticeable progress.  Now we just had to wait for the next steps in the plan -- scans and a consult; then we would meet with our oncologist again.  We were eager to have these steps done -- it would feel good to have a concrete plan in front of us.

We were going through life as normally as possible.  Making plans as best we could, but everything was tentative.

Funny how that works -- The truth of the matter is that all of life is unknown, but we certainly don't live like it is.  We live like we know what will happen, but the reality is that we don't know.  Something like this just puts that fact in front of us and forces us to acknowledge it more.

The days went by while we were waiting to hear about our next appointments.  Waiting is not always easy -- especially for someone whose brain rarely - if ever - shuts off.  I want to see the big picture start to finish.  I am a problem solver by nature, so as different scenarios pop up in my mind, I naturally try to envision plans and solutions.  It is those moments when I'm trying to think too far ahead that I get overwhelmed.  My dear, sweet pastor's wife - my friend - said to me, "It's like you're on a path, and there's a bend up ahead.  You're trying to see around the bend, and you aren't even to the bend yet."  I knew that was true.  God gives us grace for today -- not for tomorrow (because we're not there yet) and not to continually re-live the life-changing moments of the recent past.  I had to force myself to turn off that automatic replay that my mind wanted to do -- the replay of Dr. Colbert's words and the replay of those initial phone calls.  Those were past.  I needed to focus on today.

We also had many opportunities to talk with each other.  We talked about focusing on today.  We determined that we need to be set on not wasting today by worrying about what might happen tomorrow.   We also talked about being thankful through all of what was going on and about the fact that we may never know the 'why' of it all, but we need to make sure we are open to what God has for us through this.

The day came with the phone call for our consult and scan appointments.  Finally, it felt like we were moving forward.  We were looking forward to this appointment.  We would get his recommendation for type, administration, and duration of chemo.  What we got was very different.  This doctor's recommendation was more surgery.  Not just more surgery, but very radical surgery.  He wanted to open Trent and remove all visible spots of cancer -- including part or all of affected organs -- he could come out of surgery without a spleen or abdominal lining or gall bladder and minus parts of his stomach, intestines, diaphragm, etc.  Following the removal of all of this tissue, they would flood his abdomen with a heated chemo solution for 90 minutes.  After that, they would flush it out, stitch him up, and we would be scheduled for 6 months of systemic chemo.  My poor husband was floored by the recommendation, and he didn't even look like he could carry on a conversation at that moment.  I stepped in and asked a few questions and made a few comments.  I kept thinking, "What is there going to be left after you get through with all of this?"    This doctor also confirmed that the type of cancer that Trent is dealing with has an extremely low responsiveness to chemo.  As we left, Trent was still very overwhelmed by what he felt he was being told that he had to do.  I stopped him right there in the hallway and told him that he didn't have to do anything.  If he didn't feel comfortable with the surgical option, we wouldn't do it.  Period.  I would never tell him that he should have done it, either.  Much of the rest of that day was spent discussing what the specialist had said.  By evening, Trent had definitely decided that he would NOT be doing the surgical option.  It was a burden lifted from him, for sure.  I would never tell him what he needed to do with this, but I was pleased that this was his decision. We would wait and plan for standard, systemic chemo after we met with the oncologist.

The next step was new scans the next week.  We would get those results when we met with our oncologist the week after that.

We had already been discussing the fact that we needed to decide on a plan to support Trent's health while he was going through chemo.  A friend had told us that she knew of a chiropractor who dealt specifically with cancer patients.  Trent asked me to contact her and get the information.  There was a free informational meeting that the doctor was having that evening.  At the end of the meeting, Trent told me that he really wanted to know more, and so we set up a consult with the doctor.  His treatment uses RIFE therapy.  I had read about this before, so I was familiar with the basic concept.  After having been told by three doctors that, essentially, chemo wouldn't work but that it was the best they could offer, the thought of doing all that damage to his body and getting minimal - if any - benefit made chemo less and less appealing all the time.  Trent was drawn to the fact that there was no physical detriment with this treatment.  Finances were the only barrier.  Since it is 'alternative' treatment, it will be all out-of-pocket.  Dr. Conners said he could start treatment if we could cover the cost of the equipment, and then we could make payments on the balance.  The amount they needed was very close to what I had in our 'catastrophic' savings.  We decided to go ahead with this treatment plan.

As they started the process with Trent, he looked at me and said, "This is the first time since all this started that I feel like there's hope."    Priceless.

We met with our oncologist, Dr. Kubiak, this week.   We got the scan results -- one nodule has increased in size by 3 mm, there was no evidence of disease (NED) in the chest.  We informed her of our decision to pursue alternative therapy at this point.  She disagrees with our choice -- we expected that.  She was, however, very respectful with the questions that she asked and the statements she made.  She wants to have more frequent scans than she would if we chose the 'traditional' route, and we are fine with that. 

So, for the moment, we have a direction.  It feels like there is a light on our path.  The future is still unknown, but it would be with or without this diagnosis. 

I have felt compelled to focus on the blessings.  There really are so many of them -- some of them are 'big' and some of them are 'small', but they are all blessings, and I want to be conscious of them.

I sense, through all that we have gone through, that the LORD is asking us to just trust.  It is a matter of trust whether we chose this route or the route of chemo, because the majority of the disease in Trent's body is undetectable by scans and there are no indicators in his blood work, either.  We just simply have to TRUST.  That's not a bad place to be, and I am at peace with wherever God is leading us down this path.  God is Love and He is All Wise and All Knowing.  We are in His hands, and He will never let us go.

And So We Begin a New Path

The path we are walking now has a name -- It's called Cancer.

On May 21st, my husband went in to have surgery to remove what we believed was an 'inflammatory mass'.  They would remove a small amount of the colon and small intestine that had been damaged by the mass and sew the two parts back together.  Nothing gave any indication that it would be anything other than simple.  He would heal from surgery, and life would continue as normal.

When I met with the surgeon, I knew immediately that something was not so straight forward as she had believed it would be.  For several days, my mind would replay her words to me, "We found cancer."  I took a deep breath.  I asked a few questions, "What type?  What do we do now?"  She removed what she could, but it was still there -- speckled throughout and incurable.  The plan would be to slow it with chemo.  Oncology had been contacted and would be in touch.  We talked for a few minutes, and then she hugged me and left me in that private room to 'process' a little bit.

I prayed.  I thanked God for His control, and I asked Him to help me.  I had been alone at the hospital that day.  (I use that word 'alone' cautiously.  I use it to say that I didn't have a friend or family member waiting with me.)  I know God is with me always, and when I met with our surgeon that day, God's presence was never more real than it was there.  I was NOT alone!!

I realized I had some phone calls to make.  Processing it internally was one thing, but I realized that I had to make my voice work - without breaking down - and tell others.  How on earth was I going to be able to call his parents and brothers and repeat those words from the surgeon?  How was I going to tell my husband?

I called my pastor first.  As I waited for him to return my call, I walked.  I was still trying to get together a mental script for what I would say when I called his family.  The walking helped ease the physical part of the emotional flood that was happening inside of me.  Pastor called back, and I gave him the news.  He offered words of comfort and encouragement.  He told me he would be praying for us.  He asked me if I knew how we would tell the children.  I hadn't yet gotten to that part of the mental processing -- I had to tell our children!

I took many more deep breaths, and I prayed some more, and then I called my husband's parents.  God gave me the strength I needed to do that.  Mom wanted to come right away, but I told her to talk to Dad first and that the two of them needed to process this themselves before coming.  After all, my husband didn't even know this yet himself.

That call was followed by a call to one of his brothers, and then to a sister in law who would relay the news to her husband, his other brother.  Then I called my family. 

In between phone calls, I sent some email messages to close friends who I knew were waiting for news.  Doing that also gave me time to 'regroup' and gather the strength to make the next call.  A few people called me back after we talked the first time.  It seemed no one was prepared to hear the news. 

It seemed like forever before he woke up -- I was anxious to see my husband.  Finally, the status board read 'Transferred' -- he was in his room. 

He was still very groggy when I arrived.  It was hard to hold back the tears.  I still wasn't sure what to say.  "Hey there.  It took you long enough to wake up.  I've been waiting a long time."  Then it came.

"Did you talk to Dr. Colbert?"

"Yes."

"What did she say?  Was she able to reconnect things?"

"She was able to remove the mass, and everything is reconnected . . . "

"Good"

". . . but she did find cancer."  (I said it.  That was enough for now.)   I had to turn my face away.  I couldn't fall apart now.  More deep breaths.

As my husband woke up more, he asked me to tell him again, and I did - this time giving a little more information.  We repeated this process a couple more times.  Somehow, it didn't seem right that it was getting easier to say.

That night, Trent's brothers and parents came and we all spent some time together.  After they left, we talked about how to tell the kids.  My dear friend Kay was keeping the kids, and she agreed to bring them to the hospital the next morning. 

As I prepared to go to sleep that night, I felt wrapped in God's blessings.  The night before, I had gone to bed thanking God for His love, care, and total control in this situation.  That night, I realized that it was a great blessing to be able to do the same thing -- those factors had not changed.  God still loved us; He still cared for us; and He was still in control of every aspect of our situation.  This diagnosis may have been a surprise to us, but God already knew.  Through the emotional turmoil of the day, I was still blessed.

When Kay brought the kids to the hospital, we kept the news simple, and reminded them that the most important thing they could do would be to pray for Daddy because we know that God is in control and that He is the greatest healer of all. They asked a few questions, but didn't talk much.  We made sure they knew people who they could talk to if they had questions or concerns.

What we had planned as a 2 - 3 day stay stretched into 7 days in the hospital.  We had several visitors.  Our pastor and his wife each came twice.  There were a few other visitors from church.  Trent's parents and brothers each visited twice.  There was also a friend Trent knew from high school who visited.  One evening, four men from church came.  They talked with Trent and laughed together.  They had a devotional time with him.  Each of the four men prayed for Trent - for us.  I was so overwhelmed by the love that they were showing toward us.  We were truly blessed!

Our surgeon met with us daily to check on Trent and see how we were doing.  We had a great team of nurses and nursing assistants.  We met our oncologist.  She was very kind and compassionate.  We got more information.  This is Appendiceal Cancer, and it is very rare.  It doesn't have a well-established protocol of its own, so they treat it like colon cancer.  It is slower growing than colon cancer, but it also is slower to respond to chemo.  We got a plan for the next 6 weeks:  First priority is to heal from surgery.  During that healing time, a consult would be set up with a doctor at the University of Minnesota -- he is the one doctor in Minnesota who has experience with Appendiceal Cancer.  There would be new scans ordered -- this time including the chest because this cancer typically spread upward.  It felt good to at least have something of a timeline in front of us.

After 7 days, we were finally dismissed.  Trent really wasn't where they wanted him to be physically, but they weren't doing anything for him, so they let us go.  We were relieved to be able to get back to a sense of 'normalcy' -- to get to be HOME.  We would focus on healing and wait for the next steps.

To be continued. . . .