Friday, June 28, 2013

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?"


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

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


". . . 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. . . .