Friday, September 27, 2013

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.

Thursday, September 5, 2013


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.