The anatomy of an emergency.

March 28, 2012

Terence on the up-swing: Eric showing him a hunting video

I am creating this post a little differently. You'll hear from  both Terence and I......I'll be typing for Terence since he's not up to it, and his post will be short........

Sherry:

"Terence is on the up-swing.....he was moved from ICU to a regular room and is doing well. Thanks for everyone's prayers, it got him through the "dark hour" of death. Whew.

The diagnoses (DX) came back confirming that the kidney we thought was "dead" was functioning somewhat but it didn't have the ability to drain since his kidney ureter is completely blocked by cancer-----they needed to drain the kidney by putting a by-pass in. The stagnant kidney created a perfect storm for an infection to brew- which it did. The ER and ICU docs and nurses worked aggressively for 3 days to stay ahead of the infection, which was life threatening.

Three days after he entered the ER the medical staff felt confident that they got a grip on it. Now they are following up on his cultures to be sure he goes home 100% clean- no infection left, or cultures re-growing, post draining.

Now he has 2 kidney by-passes which he was hoping not to have.  In the midst of all the chaos, Terence was barely cognitive and had difficulty understanding the need for the nephrostomy (kidney by-pass)- so he wouldn't give his consent.  He kept insisting that he came in with a fever so why wouldn't they just give him some Tylenol and send him home. At one point there were 3 doctors, his nurse, Nadine (our daughter) and I trying to explain it to him. Mike (our son-in law who is an internalist whom Terence trusts very much),  had to explain in simple terms that he is very sick and needs medical intervention.

Our grand daughter Annie waiting outside to see "Papi"

At this point, Terence was so overwhelmed and exhausted (his blood pressure was dropping)... he laid his head back, closed his eyes and deferred to me; "Sherry, I'm going to sleep.....get my back"....I.e.- "You make the decision, I trust you".  They rushed in with the consent form while he was still somewhat cognizant (which reminded me to check into his medical directive on file....lots to think about....).

Terence:  "When all this happened, I was shocked.  I didn't expect to get this sick. I thought 'why can’t I take a couple a couple Tylenol and go home?'…..I guess sometimes I am naïve to the depth of this illness. An infection for any chemo patient can be deadly, I keep forgetting that. I guess at this point, I’ve resolved myself to say,  'OK- I have physical limitations.' I hate that”.

Sherry-  "I had been in prayer from the onset of his fever on Saturday.... we needed wisdom from above to navigate through everything that was being thrown at us.  I knew he needed the surgery to get to the source of the infection (for starters)- so that was no question in my mind. But I also understand that even a clear cut decision like this has long lasting emotional results- it is hard for you and I to understand, we are not terminal patients....but every time cancer strikes, it feels like a low blow and one more step toward the grave.  Terence needs to process  all of that information and come out strong in spirit. He never wants to feel like he is giving up. The "process" he takes is usually a sense of mourning and sadness that cancer is evidently progressing, then a sense of anger.  Only then is he usually willing to make a decision, any decision.  Typically those of us standing by (medical staff and family) don't understand the delay, but I've realized that it's an important step for Terence; I find myself balancing the urgency of medical intervention and being sure that Terence exercises his right as a patient.

Not being completely aware of the urgency, I needed to encourage him to submit to the healing ministry of the medical staff. I reminded him that they are in the medical field because they were compelled to help others heal- and it was God who designed them that way------so he could release himself to the their hands knowing that ultimately  Jesus is the Great Physician".

Mike, helping Pop understand the seriousness & Callie keeping it light

Terence: " I knew when I started to loose my ability to think clearly.....I was loopy it was necessary to rely on the wisdom of my wife-I had 4 doctors asking to me to make life changing decisions on the fly------my wife….my best friend….whom I trust to make decisions in my behalf……..I trust in her wisdom as I know she’s relies on the Lord…….this is another example of how much I love my wife. I know she knows what’s best for me in times when I cannot articulate…she’s there.  I pray that all my friends would have a wife like this".

 Sherry: "I think that's the 'power of two'- it was important that Terence have an advocate. At a crucial point (once we had made the decision to have the procedure done), the next question was whether or not to make the transfer to UW medicine where he receives all of his cancer care- the continuity of care is important to us and the hospital he ended up in didn't have his records on file- so I was constantly fighting an uphill battle- trying to bring them up to date on all of his care.  Terence initially wanted to transfer to our hospital in Seattle, but they didn't want him to....

Negotiating our thoughts through this, I  reached a point  where I said to my daughter "Well....maybe we should just stay here....it's easier".  Her reply was "mom, you need to be your own advocate and we need to find out what's best for Pop, if it's staying here, then  stay because it's whats best. Don't let them make the decision for you".

Well said daughter.

Terence:  "Throughout this difficult time, my son Eric and son-in law Mike (a naval ICU nurse and and Internalist)  were there questioning what needed to be questioned- things that Sherry wouldn't know to ask. I felt great peace in that."

Advocacy is important.

Praying for Terence before he went into emergency surgery.

Sherry:   Long days.....I never really left Terence alone in the ICU because they didn't have his history................Our grown children stayed by our sides and helped relieve burdens and pressure.  

Prayer was most important. At one point, Terence awoke and saw Carmen and Donna in room quietly praying. It was 1:00 Am. He saw them and was able to rest knowing that intersession was being made".

Terence: I cannot express in words  how much we feel loved. Our children, family and friends have been here.....and even our friends  from the other side of the world are praying.....this is all huge and we never take any of this for granted".

Sherry:   Day 5- things are looking good for Terence- reports came back today that no new bacteria is growing in his most recent culture, so he may be able to come home tomorrow (Thursday). He is in a little more pain today........

 I don't understand the anatomy of this illness. It takes sudden twists and turns in the blink of an eye usually catching us off guard. But we we take everything on a day to day basis living life simplified-----

1. trusting in our Heavenly Father who is sovereign and loving,

2. enjoying each other and our family and friends,

3. giving God glory in all things,

4. facing each day knowing that His  grace is sufficient for what every it is that we will be facing that day.

In closing, I'll leave you with Terence's quote for the day: 

"Sherry, be sure to listen to the rain....it's like God is playing symphony just for you. I think you'll find a variety of simple pleasures in it to help you through this".

 

Terence & Sherry

Into the ICU

Our daughter -in law Callie with Terence in the ICU last night.

 March 25, 2012

by sherry

We've been in the ICU all night- came into the ER 11 hours ago and have been in ICU for the past 6 hours.  Terence woke up Saturday morning feeling pretty bad- he slept most of the day 

and I watched his temperature since he looked kind of flushed.

Around 5 Pm we called the triage nurse at UW Medical center because he had a low grade fever of 100.4 she told us to watch it and if it rose any higher, to call. Terence is a chemo patient, so any time you're on chemo, they watch for a fever which means there is most likely an infection in your body somewhere- the danger is there is no immune system to fight it. 

His fever reached 103.4/ I texted my son and son-law this info (one is a PA and the other a nurse in the ICU)- they both said to get into an ER right away. By the time we got into ER Terence's temperature was rising....103.7/103.8/103.9......... his heart rate was 120 (high) and his blood pressure was starting to fall on a consistent basis.  They had run blood tests/and his white blood cell count came back at 23- (last Tuesday it was at 5) which indicates an infection somewhere. They ran labs/cultures/and still haven't identified the source of the infection.  But they started him on 3 antibiotics and 2 IV's for fluids (a Bolus? Pumping him full of fluids as fast as possible to raise his BP)- an attempt to be sure Terence doesn't become septic by treating the infection aggressively so the infection doesn't get out of hand.

Eric and Terence sleeping- finally.

11 hours later, his temperature is at a cool 98.8 and remaining steady. His BP stopped the downward trend and is steady, but still a little bit low. His heart rate is also lower (than it was) but still hovering at abround 100- to 105. They'd like to get it down below 100 on a steady basis.  Still no indication of the source of the infection, but the docs just wanted to get Terence through the night.  My son Eric stayed with us most of the night.

Looks like he made it :)  I'm waiting for the day shift doc to come in and review- and start the plan for today.  Most likely another blood transfusion to give him a big boost.  

He's been sleeping through the night- so far I think he's slept about 20 hours since Saturday morning! 

I'll catch you up when we hear back from his docs later this morning.

What Keeps me going. By Terence

March 20, 2012
by terence

Every day is a battle.  I find that if its not swollen lymph nodes, then it’s a kidney problem, if it’s not that, then it's bone pain....it runs the gamut of a hundred other little things that may happen on any given day.

Tomorrow is Tuesday and it’s time for my weekly oncology appointment in Seattle. I am really starting to get irritated by them and I  hate going.  I know that my oncologist desires to help me but it seems like every time we go they find another portion of my body is causing trouble.

I was recently talking to Sherry about my health (again) and I said that I could feel my body struggling to survive.  Yet, more importantly I told her that my spirit feels strong.  I’ve never doubted and have always known that the Lord is with me through this whole thing. The Lord says, “I will never leave you or forsake you” and I've always believed it.

During times of more intense struggles I'm not afraid, I become silently annoyed. This all seems more of a hassle to me than anything.  But when those days turn into weeks and months discouragement can befall me.  That's when the scripture, "why are you so downcast? Put your hope in God" comes alive to me and I  give the praise to God that’s due His name and then I am uplifted in an unexplainable way. It refreshes me and keeps me going.

(Of course, Sherry tries to help me by buying me new duds every once in awhile...she thinks I need it to refresh my soul. I don't have the heart to tell her that guys don't need new clothes to feel reinvigorated, but she seems to enjoy shopping, so I let her. I guess reinvigorates her)!

I won't tell Sherry

Terence (in my new duds).

Looking at pictures of a healthy Terence undermined my ability to hope for our future.

The life of faith is continually renewed by victory over doubt.

 March 19, 2012

by sherry

A couple of things today.  This blog is about learning how to 'Live above cancer" which to me, means several things: not just living with cancer but not to allowing cancer and all of it's minions dominate our life. 

Most importantly recognizing that cancer (or any major challenge) sifts and tests our faith.  God's desire is that this sifting process (or scrutinizing) will strengthen us so that we may also strengthen other who are facing difficulties.

Luke 22:31-32-  “Simon, Simon, Satan has asked to sift all of you as wheat.  But I have prayed for you, Simon, that your faith may not fail. And when you have turned back, strengthen your brothers.”

 

Before I go on, today's report for Terence is that he is struggling with more swelling (lymph edema) in his legs, pelvis and pubic area which makes it so that he is recliner bound- it's important that he remains in a somewhat inverted position (hips above his heart) to help the lymph fluids flow backwards.  This is difficult for him (and my heart) because it is really disabling.  He needs a walker to walk more than 50 yards and has to think twice about whether or not he will commit to those 50 yards. He has an appointment today that will hopefully allow him to get lymphatic massages, which will help.

And so we pray.  We pray continually.  No weapon formed against him will prosper. We speak life over his body. We pray for restoration. Speaking of which, that brings me back to today's post: faith continually being renewed by victory over doubt.

 

Last night I began organizing years of our photographs which span over a period of 30 years. I put this off for many years because as a busy mom, I never got to it. But when Terence was diagnosed I found time on my hands, but no heart. It was too heart breaking sifting through photos of a once healthy Terence; looking at pictures of a young couple (us) that still had hopes for a future......virgins to true hardship.  Those photographs undermined my faith. 

 

Every time I looked at them I found myself mourning a loss of our future and our dreams. It brought sadness and doubt of a future with Terence. So I had to put them away.  But last night I figured it was time to get over it. I sorted through hundreds of photos- photos of a time we were happy-go-lucky, never fearing the future. As I did this I prayed that the Lord would renew my faith with that same naivete.  Not that I want to be naive of our future (the doctor's reports will be sure that I can't),  I just want to be able to believe in the Lord (have faith) more than be sad and fearful.... which brings doubt.  So I exposed myself to the thing that causes the most sadness and fear and doubt and I got the pictures sorted out. 

 

Apostle Paul teaches us that we can know if we’re mature by whether we trust Jesus,  and whether we keep pressing on. Those who are mature know this and act by it. If you do not know this, and/or you do not act by it, God will sift you further  (Philippians 3:1-16).

 

Through this horrible cancer journey our faith is being sifted or scrutinized and dissected .....and we hope not to be found wanting, but to growing solid and mature through this. The thing that enables me to grow through this sifting process and not shrink back from  the fear and pain is knowing that Jesus himself prays for us and that He is cheering us on and enabling us (I can do all things through Christ who strengthens me).

So today I can look at old pictures of a healthy and active Terence and be renewed in my faith.  This is a new step of victory over doubt.

 

Enjoy some of these  pictures, I did!

Scaling a 100 foot waterfall in Mexico

On our trophy boat on Lake Chelan

Visiting old ghost towns in Wyoming

Outstanding Young Professional 1990

Rough housing with the grand kids, 2007

Adding another trophy to his collection.

In the water, Lake Chelan

Luke 22:31-32

Contemporary English Version (CEV)

Jesus' Disciples faith will Be Tested

 Jesus said, "Simon, listen to me! Satan has demanded the right to test you, as a farmer does when he separates wheat from the husks. ^[But Simon, I have prayed that your faith will be strong. And when you have come back to me, help the others."

 

 

Living above it. Or trying to any way!

A $3,000. white cell booster that helps reduce the risk of infection.

March 18, 2012
by sherry

Update- cycle 2 day 5 of chemo and Terence is doing well. It is 26 days over all, and he has little nausea and remarkably, little pain in his abdomen/pelvic area.  Terence's chemotherapy dosage was increased by 20% and it seemed to immediately knock the pain down a lot.  He started walking a lot more   (the tumors in his pelvic area had caused caused lymph edema, which made it difficult to walk), although after going to the grocery store with me today, his right leg/pelvic area swelled enough to become uncomfortable and needed to be off his feet again. Terence has an appointment with his GP to discuss manual lymphatic massage- and hopefully this will help him be able to reduce the imminent threat it always seems to have over him.

Another (small) thing he deals with is the side effects from the Neulasta shot. He gets this shot with chemo every 3 weeks - it is given to stimulate Terence's bone marrow function- it helps him to produce white blood cells reducing the risk of infection.  The main side effect is deep bone pain- which he tells me is deep...... morphine cannot even touch it.  Some nights he sleeps an hour or two with a heating pad in bed, then gets up and moves to the recliner until he can't stand that any longer, then he comes back to bed.  Someimes I want to suggest a hot bath, but then I remember he has the nephrotomy tube inserted into his kidney which protrudes through his back and can't be submerged.

St. Paddy's day 2012

He is learning to live with the tubes. He hates it, but never complains.  My schedule tightly  revolves around his now since he can't change the dressings or flush the tubes out himself (located in his back/kidney area), which means my bath time and bed time come after his, and my day begins before his.  Nephrostomy bags need to be sanitized and we switch out bags for evening and day use.  I try to make life as easy as possible for him because I often think if it were me in that situation I would be pretty miserable. I enjoy my bath time, but with PICC lines and tubes, a bath time would be impossible and a shower is a real hassle. Not only is there little enjoyment left in the small things but they can become problematic at times.  Terence is one who looks forward to "falling into bed" at the end of a long day. But now we have to arrange his tubes, clip them to the bed side then arrange his pillow wedges for his leg and hip elevation.......so even bed time has a regimen. So like I said, I try to make life as easy as possible for him and as comfortable as possible. He never complains and usually has a bright side to everything.  Which is admirable.  These tubes are likely to never come out short of a miraculous healing.

On a side note: I have recovered (about 75%) from walking pneumonia, today being my first good day (out of my pajamas).  My sister Charla came down the day before chemo to help out.  By the time chemo was done, I was spent and she made it possible for me to stay in bed for three solid days with no worries about Terence, meals or house work.  What a real blessing she is.  She even bought white and pink flowers and planted them outside our entry way, which really brightened our outlook; it reminded us that even though the skies are grey and the ground is wet spring is right around the corner and not to lose heart.

 These acts of kindness have ministered to us greatly; faith without works is dead.
" My brothers, what is the gain if anyone says he has faith, but he does not have works? Is the faith able to save him? But if a brother or a sister is naked and may be lacking in daily food, and any one of you say to them, Go in peace, be warmed and filled, but does not give them the things the body needs, what gain [is it]? So also faith, if it does not have works, is dead being by itself. But someone will say, You have faith, and I have works. Show me your faith apart from your works, and I will show you my faith out of my works" (James 2:14-26).

Thank you Charla and John and to every one else that have shown us kindness by your acts of faith.

Sherry & Terence

When you're weary...

When you're weary

by sherry, March 13, 2012

Whew. The last three weeks...wait, the last 8 weeks have been non-stop. I can't count the trips to the hospital nor the number of pokes, prods and cuts Terence has had to endure to make it here.  At times, he barely had the strength to endure this crazy marathon.

Here's a great story that has helped us:

"Then he put forth his hand, and took her, and pulled her in   unto him into the ark."
             -- Genesis 8:9

Wearied out with her wanderings, the dove returns at length to the ark as her only resting place. How heavily she flew- but she struggled on.

Noah has been looking out for his dove all day long, and is ready to receive her.

She had just enough strength to reach the edge of the ark, she could hardly land upon it, and was ready to drop, when Noah puts forth his hand and pulled her into him. 

Mark that: "pulled her in unto him." She did not fly right in herself, (she was too weary to do so). She flew as far as she could, and then he put forth his hand and pulled her into him.

This was an act of mercy shown to the wandering dove.  And to us? The Lord will stretch forth his hand and "pull us in"-in to himself, and give us rest!

This story encourages Terence and I right now- we are both weary, but  the Lord draws us into Himself and give us the rest and strength we need to get through. 

*Exhale*

And, He will do this for you too.

 Sherry & Terence

Terence's PICC line has been bleeding off and on.

March 5, 2012
by sherry

We made it through the week-end without another trip to the hospital!  Last week we took 4 trips, totaling over 20 hours at the hospital (that's a part time job), countless miles and parking expenses. Terence's PICC line has been bleeding off and on for a week. The danger here is obviously the bleeding but also being on chemo he is also prone to infection so the dressing needs to be changed and it's a sterile procedure.  Terence & I are hoping we won't have to keep up with multiple trips every week-
 The thought is exhausting.

I wasn't feeling well yesterday so our youngest son Andrew drove Terence to his weekly appointment yesterday.  Everything turned out okay. All T's labs came back fine. *Sigh of relief*.  It's nice to get a break! I feel like we've been chasing something down for about 2 months-non stop- I'm tired and I know Terence is too.  Speaking of which I'll be going into urgent care tomorrow, I think I have strep throat. So I've been in full masked garb (protecting Terence), we sit at opposite ends of the room and everything is continuously dis-infected.  Jeez, this is all so exhausting. All I can say right now is that God is Good and cancer sucks!

Terence & our grand daughter Annie

Meanwhile: this is day 18 on chemo and up until yesterday he has been doing really well aside from the  typical nausea and fatigue caused by chemo. Three weeks ago, the cancer had caused so much swelling and pain he couldn't walk without assistance.  My sister bought him a walker (the "deluxe" model :), and though he appreciated it his face betrayed his true feelings.....discouragement and unbelief that he was in a position to actually need it.  It had seemed that once he became 'disabled' in that manner along with needing nursing/assistance care for his nephrostomy tube it really kept him house bound and it became tough to break through a cycle of discouragement.
But after only 4 days of chemo he was able to walk on his own!    He started driving his truck again a few days ago, he took our dog Cead out for a drive along the harbor.  He needed that. Cycle one is winding down, and I can tell. The cancer related pain and swelling is slowly returning, he needs to sleep with a heating pad for pain relief and he walks slowly and more carefully.  Also, I keep in the back of my mind that he has only one functioning kidney. I am told that you can live on one kidney, but this kidney isn't 100% healthy; it's the one that had the least amount of cancerous tissue in it. I only share this for prayer purposes.  Pray this kidney is not adversely effected by the chemo.

His next date with chemo is March 13/April 3 and then scans. This is only a 9 week cycle to determine if its working. So far, after only 18 days, it seems to be working.......we're praying this works, because after this, there is no known treatment (FDA approved) for Terence.

We are both physically and emotionally tired, the road's getting a little rougher but God's grace continues to carry us on His wings, strengthening our inner man.  I have to admit--as difficult as this has been, it's been wonderful experiencing the Grace we read about on the bible.
 It's been an amazing journey thus far.

We believe in Miracles!

Even here, I am looked after

 Hagar In The Wilderness

The lamentation of the stricken mother in the desert is pathetically portrayed; the empty water-flask-now 

cast aside as a useless thing-and the out-stretched figure of the dying child are also. Hagar was destitute. 

Yet God had opened her eyes to see the vivifying well of water, wherewith to fill her bottle and restore her son. 

 March 4, 2012

by sherry

 Terence & I are living in an extreme place with cancer. I say extreme, because it is. 

Everything that we deal with on a daily basis is extreme. 

Cancer can be a thief who attempts to come into our house every day to steal from us. 

 If we're not careful, that's what we see........a thief.....stealing, killing and destroying

 our lives and our future.

Along the subject of what you see,  I was reading the scriptures today and came across the story of Hagar and her son Ishmael.  A long story short, Hagar was sent out of the camp into the desert with her son.  Hagar was feeling destitute and afraid for her and her son's future and she cried out.  Then an angel of God called to Hagar from heaven and said to her, "What is the matter, Hagar? Do not be afraid", Then God opened her eyes, and she saw a well of water.  She filled the skin with water and gave the boy a drink. And God was with the boy as he grew up.

   

Genesis 16:13 explains the name as a result of Hagar crying out, “Beer-lahai-roi”- The Well of the Living One who sees me....."Even here have I am looked after by the One seeing me!"  

On my worst days I am disheveled and depressed- those are the days I fight the feelings of sadness and loneliness, my heart breaking for the one I love, cancer and it's effects making me feel anxious for our future-----it's on those days, that I desperately desire two things:

1. to be reminded that God sees us and is looking after us in our despair.

2. for the Lord to open our eyes so we can see the well of water",

 which is hope for our future.

It has been said of Hagar that her wilderness cried of the presence and the absence of God. All of us live through life wilderesses that cry of the presence and absence of God.  But God speaks out of the silence: "I hear! I See! I hear the mother crying."

God Hears and sees us in the  in the Wilderness
In wilderness places (our difficult times) one experiences both the presence and the absence of God. When we find ourselves in the wilderness most are afraid. Many are in despair. A few are frozen, immobilized, paralyzed–unable to move, much less able to get themselves back on the journey of getting to a better place. No matter what makes your place a wilderness, wilderness places can be lonely.

 The Genesis story describes such a lonely wilderness place, the place where Hagar and her son were sent.  But the  "absent God" was not absent at all; he was present in her misery. "Do not be afraid," He  said to Hagar. "Open your eyes. I have heard the child, and I know the child's sufferings. Pick him up and comfort him. Open your eyes. There is water for him. See the well and give him a drink."

I pray that our eyes will be opened and we will see the well of water that God has provided for us and that we will know that He never leaves us or forsakes us, even during extreme 

moments of loneliness and despair.

 

        "Even here I am looked after by the One seeing me"

                                            Sherry