The C Word – Settling In

It’s hard to believe it has been a week since I last posted.  It’s been a busy week but not an overwhelming week for us. 

The great communication between all the various arms of hospice has been great.  George has had some changes to his TPN solution based on his Monday labs.  The pharmacy is good about contacting me with what is being changed and letting me know if there is some adjustment I need to make at home (i.e. amount of insulin to add).  George only needs to infuse 16 hours a day so we are now able to get those in during evening, night and early morning so he can be free from attachments for most of the day.  It makes my day easier as I don’t have to help him cart the TPN backpack to and from the bathroom. 

They always make sure he is comfortable with the care he is getting.  Now that the first rush of hospice workers has all come to introduce themselves, the main visits we get will be the nurse(s) for labs and dressing changes.  At least for now. 

The social worker made it a point to get back to us within 24 hours with the contacts for bereavement/anticipatory grief counseling in Roseville and Stockton so all the kids and grandkids can begin working towards taking advantage of this service. 

I’ve settled into a routine at home.  I plan the start time for his nightly TPN to coincide with whatever may be going on the next day, allowing time to stop the machine and do a glucose reading before we or I need to step out.  I’ve got the set up down to a science.  Got the showering under control. 

We are still tweaking food choices for George.  It just seems so limiting.  Not only do the foods have to be low-fat soft things or full liquid, they need to have some flavor and satisfaction for him.  We’ve found a few things… scrambled eggs, ice cream, Cheetos, cheerios, rice krispies, garlic mashed potatoes.  But even with these safe foods, George often feels uncomfortable after eating them.  I’m sure it’s discouraging for him. 

The mental aspect of all of this is taking a toll.  Between not feeling well, feeling trapped in the house, feeling tethered to lines, feeling tired all the time… for him it’s just an endless cycle with no clear end in sight. 

I can offer him an ear to listen, a hug or embrace, a hand to hold.  I can nurse his physical wounds to some degree.  I can reassure him time and again that I will be there for him, that I’m not going anywhere.  What I can’t do is get inside his head and make things better.  For that, I am helpless. 

For that I need to just pray for something to click, for something that gives him release from the torment of the prison of his mind.  I pray that he can reconcile things and get some peace.  I pray for God to reach down and help him in some way, shape or form.  Send him a clear signal.  Sometimes that’s all we can do - - just be quiet and pray. 

The C Word – Improved Level of Care

The level of care we received under Pathways Home and Health was lacking.  With a nurse who called late (9:15pm is late for us), tell me she had George on her schedule for Tuesday to change out a dressing but that she had a very full schedule with five patients and four of them needing extra time.  She proceeded to say that she didn’t know if she would see George but would try.  Knowing that we needed to move towards a Friday time slot, I asked if we could wait an extra day and change the dressing on Wednesday this week and Friday next week.  She said, “I don’t work on Wednesdays.”  So I said, “What about Thursday this week and Friday next week?”  She said, “My schedule is already full on Thursday.”  By this time I’m thinking that things with this agency aren’t very well organized and, on top of that, the last thing I should be worrying about is whether or not a nurse can ‘fit us in’ to the schedule.  (She ended up working a half day on Wednesday so came to see George.)

Fast forward to our discharge from the hospital this week with Hospice of the Valley.  The hospital release person was on the phone with me on and off during the afternoon.  When it was discovered that the pharmacy we wanted to use was not under contract with them, I asked who they did have a contract with.  She said “Sutter Infusion & Pharmacy), I said that was fine.  It was too late for them to put together TPN for him in order to go home Tuesday night.  Then I remembered that I had some TPN at home in the fridge and still had the equipment as well. It was decided that I could go home with that and HOV would come out in the morning to do intake. 

It was nice to go home to our own bed and sleep.  No nurses poking and checking in the middle of the night.  We arrived home about 5PM and George fell asleep in his recliner until 8 and then got up and went to bed.  He didn’t even notice when I hooked him up to the TPN! 

Queenie, the intake person, arrived about 9:30 and spent two hours going over everything with us.  While here, the Hospice Infusion nurse (Sue) called and it worked out well that she could talk to me to find out what I’d been doing and that sort of thing.  She was very friendly and helpful and even called me later that evening to be sure that I’d received everything and was doing okay.  She had also been in touch with Dr. B who wanted labs done today so had another courier come by between 7 and 9 pm to drop off what we would be needing! 

This morning our Case Worker (a nurse), Gerardo called at 9 and said that he and Sue would arrive about 11:00 to meet George.  While he did vitals, etc. with George, Sue spent time with me looking over my supplies, asking me questions, etc.  She showed me how to change the settings on the pump as we were lowering the time from 24 hours to 20 hours of infusion.  She watched me as I unhooked George from the machine and was impressed with the knowledge I had thus far on his care. 

They both told me/us what to expect and answered any questions we had. 

I felt VERY comfortable with everything.  It’s almost as if a weight has been lifted because I have not only Hospice of the Valley for support but a better pharmacy support as well. 

I felt more energized this morning than I have in a long time, getting up early to start working on one of my projects, did some cleaning and vacuuming, ran an errand, paid some bills and printed out our taxes.  Felt good to feel I’ve accomplished something! (Something not related to George’s care for a change.)

Tomorrow we meet the social worker, Lisa.  She will be one of our main points of contact.  We are anxious to hook up our daughters and granddaughters to anticipatory grief counseling somewhere close to where they live.  I feel it important to start now, no matter how long in the future George will pass.  I didn’t want to wait until it was so close that none of us would have a good chance to process things.  That is the main reason I wanted George to be on hospice.  Hospice is able to get more of the medications and supplies that we need without us needing to go to the store to get them.  It’s all covered under Medicare. 

George is having a difficult time accepting that he is on hospice.  The very word, hospice, to him has a negative connotation.  It’s like, “this is it, I’m going to die in six month”, even though numerous people have told him they know people who have had it for one or more years. 

He is also not happy that we can no longer go to Stanford Cancer Center.  Our oncologist really hasn’t done anything for us in quite some time (except monitor labs)  - and since George is on TPN he will have labs weekly so there is no need for that.  He is sad that he won’t be able to see the Palliative Nurse, In Eui.  He feels like he had a good rapport going with her. 

I am hoping that this experience will bring something positive to our table.  Death is a natural thing and one day we will all die.  Hopefully we can take some of the fear away that everyone is having right now.  And hopefully they will be able to keep George out of the hospital for a lot longer!  It has been an absolutely horrid five months of continual ups and downs in two to three week cycles.  It has exhausted both of us at times, moreso him than me.  My focus has been compromised for the past few weeks as I have had to deal with numerous ER trips and hospital trips. 

Now our focus is on keeping George comfortable at home and hopefully make him feel well enough to be able to focus on his relationships with others.  Quality versus quantity is what we have been trying to concentrate on and with our new connection to hospice that should be more achievable. 

I’m breathing easier than I have in a long time.  I can’t wait to resume my crafting as I’ve been on hiatus for months now. 

I know without a doubt that this was the right decision for us.  What a difference a week can make – a week that has allowed US to take charge of who cares for us and not some case manager in the hospital that doesn’t know what we want. 

Finding the right match for home care or for hospice care is so important.  It is up to us, the caregivers, to take charge of this.  To ensure that you have proper care and are happy with it.  You have the right to “hire” and “fire” providers that don’t meet your expectation.  I “fired” our home care and our pharmacy in order to find a better fit.  I’m so glad I did this. 

What a difference a week makes!

The C Word – Planning to Go Home

Yesterday was quite a busy day.  Lots of visits from various staff. 

The Nursing Department head for this floor came in to ensure that all the staff were doing their job and to ask if we were pleased with how things have been going.  We have been happy with them.  We’ve had most of the same nurses on a daily basis.  Yida, our dayshift nurse, is quite cheerful, knowledgeable and has a good sense of humor.  Yesterday she had a “side-kick”, Rachel, who has just started to work part time here as she works mainly at O’Connor hospital.  She was this tiny gal that doesn’t look like she’s out of high school yet but her skills were impeccable.  Our evening shift nurse has been Maria and she did a good job as well.  The night shift was covered by Lorena.  She was typically very quiet when she came in and spoke softly so that George only needed to respond to her requests without fully awakening. 

The second visitor of the day was Occupational Therapy to check on how George is functioning and to ensure that he is going to be okay at home. 

The third visitor of the day was Dr. Bastidas.  We had a few questions for him.  During our previous hospital stay he had said he would try to set things up with Corum to administer TPN at home.  However, he was away when discharge was happening so the hospital set us up wit Silicon Valley Pharmacy.  We wanted to know if it was possible to change pharmacies when we go home.  We also said that we were not happy with Pathways care and had decided to go ahead and sign up with Hospice of the Valley and not need to worry about transitioning to them at a later date.  He said that all sounded fine but we should speak to the Case Manager as soon as possible so they can check into all the logistics.  He said he would stay on as the supervising doctor when we go home.  George was concerned about the “6 month rule” with hospice and Dr. B said it wasn’t a problem, you can “graduate” every six months meaning that if you still need care, they ask for an extension for another six months. 

The next visitor was Pastor Nick who came by to visit and chat. 

We then saw the Wound Care nurse as she wanted to check out the abscess “hole” and the PEG tube area.  She unpacked the abscess wound and checked it out.  She recommended this wound “rope” that has some gel in it to help lubricate the wound to allow for healing and also has silver in it to stop bacteria from growing.  She recommended that because the gauze dries out and thus is a bit painful to George when we take it out.  I looked online to purchase some for home and the stuff is $40 for 5 strips!  That would add up to over $280 for one month!  I think we will use it but maybe not every day. 

The sixth visitor was Catalina, the Case Manager.  I stepped out into the hallway with her (as Pastor Nick was still in the room) and made sure the details of our discharge were accurate.  I suggested that Wednesday or perhaps Thursday would be a target.  I thought we still needed the TPN to be closer to being in range.  She was already working on reaching out to Hospice of the Valley. 

I left the hospital to get a massage after that (so very much needed!) and had a wonderful Himalayan Salt Stone and Eucalyptus aromatherapy massage by Felisa.  Ninety minutes of just laying still and being pampered.  I went home to shower and bring the (junk) mail inside.

When I returned, I heard George had a seventh visitor, Dr. Guetzkow.  I think he is the attending physician for this floor.  He told George he was going to push Catalina to send us home today.  I told George that I was fine with waiting until Wednesday rather than feel rushed to get out of here. 

We both slept well last night.  Me from the relaxing massage and George because he is allowed to have medications via mouth now and he requested some Ambien to help him get to sleep. 

We shall see what happens today.  At least we know there is a plan for going home.

The C Word – Dear Mom

Dear Mom:

I have my stuffed calico kitty (she looks like your favorite kitty Chloe) with your ashes in it on my bed as I sit in the hospital with George.  When I was packing up to come stay at the hospital, I looked over and saw you – and decided that I needed you with me.

There are days when I miss you so much.  When all I want to do is pick up the phone and talk to you.  A lot of people will say “everything will be okay” – but when your mom says it to you, it feels so much better.  There’s nothing like a mother’s love and comfort when things are not going so well.  There’s nothing better than a mom’s lap to rest on, shoulder to cry on, hand to hold.  I don’t think I did that very often with you once I became an adult.  I should have.  I know when my kids snuggle with me or sit beside me, I so appreciate and love the gesture.  It will never get old for me!  My kids are my kids no matter what their biological age is. 

The tables are starting to turn a bit where my girls are starting to let me lean on them, to talk to them about what I’m feeling.  They are doing their best to be there for me.  Becke is calling me about once a week to talk - - just like I used to do with you.  Sara will spend time with me, sometimes just hanging out, sometimes walking – just like I used to do with you when I visited. 

These past four and a half years have been hard ones.  There’ve been some easy moments in between the harsh ones.  Lately, though, it’s been one thing after another.  Every other week it seems George needs medical attention for something.  It’s wearing us out little by little because there’s not enough time in between to catch our breath.  Not enough time to have some semblance of normalcy. 

I know you would understand some of that.  Caring for dad towards the end was hard on you.  Hard to get out.  Hard to make plans.  Hard to watch him slide downhill mentally and physically.  I can’t believe it has been nearly thirteen years since his passing.  I’m sure that you missed him a lot in the beginning, but you were also relieved that he was not in pain anymore.  That’s what will happen in my case as well.  

These past few months have been difficult to feel like I’ve accomplished anything.  I haven’t had much chance to sew or craft.  My exercise routine has all but stopped.  Not always because of caring for George – but lots of rain and dark mornings hampers that as well.  It’s hard to make plans. Some days I just don’t have the energy to do much.  And I have to be okay with that. 

This journey with the “C” word has become all consuming.  Some days or weeks it is hard to find moments of pleasure and joy.  When the world you live in is restricted to four walls, there’s not much else to talk about.  The news is, well, not so great most of the time.  How I wish there would be a news channel that talked only about good things!  That would be so refreshing! I know that’s something you would like to have had in your lifetime as well. 

Mom, it’s been nice chatting with you.  I know that your heavenly realm is so beautiful and you are surrounded by all of your brothers and sisters and their wives as well as your mom and your dad.  I bet you have the best Christmas parties ever with them just like when you were here. 

I know you are watching down from heaven – but I sure wish you were here.  For now, I’ll hug my Chloe/mom kitty and feel your presence here.

I love you.

Dawn

The C Word – Rest and Recovery

I am grateful that I have been able to relax a bit now that George is settled in his room.  He spends a lot of time sleeping so I am able to rest, take a nap, get outside for a little bit.  After a whirlwind week at home trying to adapt to a new schedule and getting a cold, this relaxing time is just what I needed. 

As we slowly get information about what took place this week, we are learning how close George was to losing more function.

We found out that when he arrived on Thursday night that his pancreatic enzymes were around 30,000.  Thus the reason for multiple blood tests because they thought they were getting wrong readings.  Normal enzyme levels are supposed to be 200! Yesterday the nurse told us they were at about 5,200.  Today they are just below 2000 at 1988.  Still a bit to go but the numbers have come down drastically.  Pancreatitis can be deadly so we are grateful that we got treatment when we did.  Treatment has been lots of IV fluids and no food.

George is still having pain in the pancreas but the nurse says that the pain will likely go on for a bit even after the numbers are back to normal.

The other out-of-whack number was his potassium.  George usually is in the low range for this.  Normally at the hospital they would be infusing more potassium into his system.  Normal range is something like 3.9-5.0.  He came in at around 7.0, went down to 6.1 and then 4.8 and today is 4.6. 

We thought that all of this was caused by the TPN formulary.  The on-call doctor today said the pancreatitis was not caused by the TPN (but the high potassium could be).  George had pancreatitis two years ago with unknown cause.  It appears that this is another anomaly that we will never know what caused it.  However, once you have had pancreatitis once, the chances of recurrence is greater.  We will just have to keep an eye on this!

Today we were told that he can have a full liquid diet and he starts back on TPN tonight.  We will see how his labs come out tomorrow.  He is starting slowly, beginning with some apple juice.  Later we’ll see if he’s up for pureed soup or ice cream.  Dr. B has told us that any food he eats is purely for pleasure as the TPN is delivering all of his nutritional needs.  With the partial bowel blockage, not enough food is passing through to absorb nutrition.  He has a gastric tube that we can allow to drain his belly as needed. 

He took his first spin around the ward this morning and sat in a chair for a few minutes.  That in and of itself is progress. 

I suspect it will be a few more days before he is able to go home. 

We are glad that things are turning around for the time being.  Glad for this rest and recovery period. 

The C Word – The Weather of Our Lives

Back East (well, in many places) there is a saying, “If you don’t like the weather, just wait awhile.  It will change.”

That’s sort of true in our lives as well.  If you don’t like what’s going on, just wait awhile.  It will change.

But, just like the weather, the change isn’t always what we want it to be.  And so we wait again – and again – ever hopeful that the winds will turn course and get on the right path again.

I feel like that is us right now.  We keep waiting for the journey to make a turn and find a place of peace.  Sometimes we think it’s right there on the horizon.  And then another storm hits and sets us off course again.

It was just last Sunday when I blogged about our/my new normal. George was home and on IV nutrition and I was trying to adjust to all the changes that came with that.  I was doing pretty good as I streamlined a bit during the week. 

On Thursday we had an appointment with Dr. Bastidas and after that George wanted to go to his bi-weekly support group at Cancer CAREPoint.  Our appointment with Dr. B was fairly quick, in part because we wanted to get to the meeting and we were running behind schedule.  George was feeling okay – not great, but okay.  He’d been saying all week that he just didn’t feel so great. 

He went to his support group and I sat in the lobby in the event he couldn’t make it through the whole thing.  It was our first outing since coming out of the hospital and George had not left the house (or the hospital) in over two weeks.  By the time the meeting was over, he came out and said he was feeling really bad.  We got to the car and I vented his Gtube to see if that would alleviate his nausea.  We keep a “barf bag” in our cars and I got that out as well.  I had one stop to make on the way home and the whole time George was dry heaving. 

He wanted pain medication as soon as we walked through the door – and I have to clamp his tube in order for him to properly digest that.  I unclamped as soon as I could as he was still not doing well.  This went on all afternoon.  By about 6:30 I decided it was time to head to the ER as pain and nausea meds were not working at all.

Thus, 6 days after discharge we were back in the ER.  There wasn’t a full lobby when we arrived so I thought that was a good sign.  What I didn’t know, is that there were people in beds in the ER waiting for rooms to open up. It took 18 hours before a bed for George opened up.

The tests showed he had elevated potassium and pancreatitis.  They took him off the TPN and started to push a lot of fluids to bring those numbers down.  I took a break at 2:30 AM after he had been officially “admitted” but had been told it would be past 9AM before a room would become available.  I had a fitful sleep and at 6:30 got up and ready to go back to the hospital, bringing what George would need for a few days stay. 

Keith came to give me a break for a few hours so I could go play with a pressure washer at Sara’s as well as do some bush trimming.  That was such a good break – to be outside and making things look so much better.

When I got back to the ER, we knew he would be transferred to a room soon – and at 2:30 it finally happened!  We ended up in the North Tower in the surgical post op rooms where we have spent PLENTY of time before.  Big rooms.  Private.  With a pull out bed.

George and I promptly fell asleep – he in bed and me in the large chair with pillows and a blanket.  I got up at 5:30 and headed home for a few hours to sit, relax, gather my belongings, etc.  When I returned, he was still sleeping and hasn’t felt like chatting at all.  I hooked up his CPAP and settled him in bed and me in my bed where I write this.

My guess is he will be here for at least three days, probably more.  The TPN he was on caused the pancreatitis and high potassium levels… so now we have to figure out what the new formula should be. 

More changes – more adaptations – more complications.  This is his fifth (?) hospitalization since December 8^th – and does not include at least 3 visits to Dr. Bastidas to fix things in regards to his fistula/abscess drain.    

It seems like the wind keeps blowing and changing direction – but we never are quite able to get ourselves on track.  At least not the track we would like.  I’m not sure how much more of this George can handle as each direction makes him more tired than the last, more vulnerable, and more emotionally distressed.  Each direction has me scrambling to adapt and change my course of action, trying to keep pace and attempt to stay one step ahead, trying to figure out what the next step might be.   

I keep praying for the strength to keep moving forward, the courage to speak truth to him, to prepare him for the days ahead. 

Which way will the wind blow tomorrow and the day or week after that. Moment by moment, breath by breath.  Constant shifts – until the day when the wind dies down and peace is found. 

The C Word – Yet Another New Normal

This past week has been a whirlwind of change for us.

The PEG line (G-tube or gastric tube) provided much relief from the irritations caused by the Ng tube.  The tradeoff is that the opening made in his belly causes some discomfort – but minor in comparison. 

He wavered for the better part of the week regarding whether or not to go ahead with surgery.  In the end, he concurs that the negative variables outweigh the positive.  He’ll still ask some questions at Dr. B’s office on Thursday.  But he is so weak right now I can’t fathom that even Dr. B. would think it a good idea. 

On Friday he was finally discharged.  The hospital lined up Pathways Home and Health Care and Silicon Valley Pharmacy to handle the TPN care.  Friday was a total day of non-stop activity for me.  From talking to the pharmacy, running last minute errands, lining up home appointments for intake and delivery of TPN, etc., I don’t think I sat still (let alone sat down) from 11:30AM until after 8PM.

As soon as George was discharged (3:30PM), I took him home and got him settled.  Then I ran to the pharmacy for a prescription and a glucose monitor and supplies.  I got home and woke George up to take a shower before he got hooked up.  The nurse arrived right after that (5:15PM).  It took 2 ½ hours to go through the intake work and then set up and hook up the TPN.  George pretty much slept through all of that and then wanted to go to bed as soon as she left.

After getting him to bed, I went back to living room to try to get some things cleaned up and organized.  I sent an email out to a bunch of folk and tried to set up a visiting schedule on our Caring Bridge site.  It was 11PM by the time my head hit a pillow.  George woke up twice to go to the bathroom which requires assistance.

The TPN is run on a pump so he can go anywhere with it.  The downside is that the between the battery and the amount of TPN fluid, the backpack that holds everything is extremely heavy.  Too heavy for George to carry.  On top of that, when he has the G-tube drain connected, that can add additional weight to carry around. 

One of the hardest parts for me is to try to figure out some sort of routine that can be maintained and allow me some time to just “be” or to get back to my craft room.  I am still recovering from a week at the hospital with him so am doing this in a slow fashion.  But I am not known for wanting to wait – I would like it all to fall in place easy.  Each day I think I am making progress in the routine so I can have some “sit” periods. 

George has been so weak.  After a week of laying in bed (with the exception of two walks around the ward), his muscle tone has decreased.  The first two days home he kept bumping into walls.

The other hard part is seeing George like this.  Emotionally he is not doing well at all.  He views this as his death sentence.  He goes to dark places.  And he is emotionally wrought with guilt over all the work I must do for him right now.  He is exhausted and sleeps a lot.  So many things he is dealing with right now.

I am helpless to change anything.  My job is to nurture as best I can.  To help him try to deal with the myriad of thoughts and emotions.  To just allow him to vent without trying to fix.  At times when I am exhausted, this can be difficult. 

I’m battling either allergies or a cold right now – and that doesn’t help.  I would love to crawl into bed at 7PM – but I still have things to do for him until 8:30 or 9:00PM.  Sometimes it is hard to let my brain find a resting place. 

It will happen.  It just takes time.  There’s a whole lot of newness to caring for George with more duties than I have ever had before.  With our luck, as soon as I have a routine going, something will happen and I’ll have to adapt yet again. 

I’m hoping that things will settle in and he will feel like going out for a ride or getting a drink somewhere.  Although he was on full liquids at the hospital, the home notes say clear liquids.  I’m hoping he can go back to full liquids as that means he can have certain foods pureed so he feels as though he is eating something.  He needs to have something to look forward to.

A lot of adjustments in a not-so-good looking place in our lives.  I pray every day to just get through the day.  That’s about all the energy I have right now.  It takes a lot of energy to find a new normal.

If anyone would like to visit, please call first – or sign up for a slot on Caring Bridge. (https://www.caringbridge.org/public/angelsforgeorge).

I also need some help in order for me to get out of the house.  Since George cannot carry the backpack containing his TPN, someone needs to follow him to the bathroom and then go back to retrieve him from the bathroom. I’ve got a few times already posted and will add as I know schedule changes, etc. 

Please continue to keep us in your prayers.  George for comfort and healing.  Me for strength and good health. 

The C Word – Moment by moment

These past few days have been full of changes, full of possible scenarios, full of having to think about decisions about what is next. 

It has now been nearly four days since the obstruction occurred.  While the drainage coming out has slowed down a little bit, it is still coming. 

The Ng tube has caused George much distress.  It has been irritating his throat to the point that he cannot talk right now.  His voice is hoarse.  Today Dr. Bastidas put in a PEG line (gastric tube) so that the Ng tube can be removed.  It will probably take a few days for George to start feeling better.  An advantage is that I can now bring in George’s CPAP machine so he can sleep better.

But we have decisions looming over us if the obstruction does not clear.  Hard decisions.  All have their own repercussions. 

1.       Go home with TPN and G-Tube. 

a.      That said, then who follows care:  Palliative or Hospice

2.      Go home with nothing and hospice

3.      Surgery to try to remove obstruction

a.      Complications/scenarios include:
Not able to clear blockage

b.      Resection could be difficult

c.       Getting through the tumors may present issues

d.      Depending on where blockage is, could get some relief and be able to eat foods or could still need TPN

e.      Possible ostomy bag

George loves Dr. Bastidas so much that he will nearly always choose surgery as his first option.  In fact, George said to me yesterday, “I have faith in Dr. Bastidas and in God.”  Subconsciously, he puts Dr. Bastidas ahead of God on some level. 

Dr. Bastidas said he cannot tell George which option he would choose.  He hesitated to sway George one way or another.  It is a decision George has to make. I believe George would do whatever Dr. Bastidas says, even if Dr B. said that going home with TPN & G-tube is a better choice.  He respects his decision that much.  But Dr. B wouldn’t come out and say anything on that.  Professionally, he probably can’t do that.

It is clear that George doesn’t feel well at all.  He may not feel well after surgery.  He would likely be able to live less than he already does. This cancer is taking him bit by bit by bit.  Whatever decision George goes with, the inevitable is going to happen. 

I struggle. I don’t want him to continue to suffer.  He has mental anguish right now.  My concern is that if he was fearful about eating before getting this obstruction, he will be even more fearful if he is able to eat again.  How is that a benefit?  Compounded fear.  Every procedure, every surgery compounds already growing fear. 

There are moments when I watch him lying in bed, totally out of it, drifting in and out of sleep – and I cry.  This is not what I want for him. This is not life. 

We are living one moment to the next.  Holding our breath.  Trying to anticipate what is next.  Will the obstruction clear?  If it does, then what?  If it doesn’t, then what?  If he has surgery, what will the benefit be, if any? 

I can hardly go beyond this moment right now.  I pray, again, for the answer to become clear.  I pray for peace of mind for George, for me, for the family. 

I do know that when I have battles with my thoughts and emotions where George is concerned, that God has delivered messages to me in a myriad of ways.  God already knows the answers but we have to be open to listen to them. 

I had an opportunity to talk to the doctor this afternoon.  He and I will have frank conversations.  He trusts me and I trust him.  I asked him what was his gut feeling about all of this.  He shrugged.  I reiterated the conversation he had with George yesterday.  I was feeling out what I believed was on his mind.  I told him that George is swaying towards surgery but that I wasn’t entirely sure if that was the answer because there are so many variables.  It might help.  Dr. Bastidas then said, “he could also come out worse than he is going in”.  The look on his face and the tone of his voice and the way he spoke to me, I believe that I got the answer I was looking for.  The one I was praying for. 

It may not be the answer we were hoping for, praying for – but it was definitely spoken from God through someone else. 

Moment by moment – that’s all I can ask for right now.  God is standing beside us, Jesus is walking with us.  Breathe.  Just breathe. 

This is a hymn I found:

Moment By Moment

1	Dying with Jesus, by death reckoned mine; Living with Jesus a new life divine; Looking to Jesus till glory doth shine, Moment by moment, O Lord, I am Thine.
	Moment by moment I’m kept in His love, Moment by moment I’ve life from above; Looking to Jesus till glory doth shine;   Moment by moment, O Lord, I am Thine.
2	Never a battle with wrong for the right, Never a contest that He doth not fight; Lifting above us His banner so white; Moment by moment I’m kept in His sight.
3	Never a trial that He is not there, Never a burden that He doth not bear; Never a sorrow that He doth not share, Moment by moment, I’m under His care.
4	Never a heartache, and never a groan, Never a teardrop, and never a moan; Never a danger but there on the throne Moment by moment He thinks of His own.
5	Never a weakness that He doth not feel, Never a sickness that He cannot heal; Moment by moment, in woe or in weal, Jesus, my Savior, abides with me still.

The C Word – Transitions

We spend our entire lives making transitions, don’t we?  From infant to toddler, toddler to preschool, preschool to elementary school, child to teenager, teenager to adult. 

We transition from one grade to the next, hopefully learning lessons about life along the way.

We also transition from one location to another, perhaps because of work or family, or the need to get away from the city or back to the city. 

Job transitions, maybe as we gain more experience or find better jobs suitable to our needs at a given moment. 

So many transitions, day in and day out.

No matter how many transitions we have grown accustomed to throughout our lifetime, nothing really prepares us for the transition from life to death.  For most of us, this is formidable.  It is huge.  So many questions and fears invade the crevices of our brain.  Since there aren’t really many people who have come back from death, there are so many unanswered questions.  The questions are not always so much about the “after” of death, but the process of dying.  Will it hurt?  Will I know when it happens?

There are other real questions and fears.  Such as, “will my loved one be okay without me”?  Fear that their loved one may forget about them.  Not wanting them to mourn and miss you – yet wanting them to mourn and miss you in the same breath. 

Utter terror of the process.  Afraid there will be a lot of pain.  Not yet wanting to leave.  Fear.  Sadness.  Panic. Terror.  So many mixed-up emotions.

I feel we are about to move into this transitional phase.  This week George had his first bowel obstruction that did not clear on its own within 24 hours.  Most have resolved themselves in fairly short order.  Right now, there is an obstruction that doesn’t appear to be clearing.  This is likely due to tumors squeezing on his intestinal walls not allowing passage of food. 

He had his first Ng tube inserted last night in the emergency room.  Over the past 24 hours, a lot of fluids are being drawn out of his belly in a myriad of colors.  They observe the output to determine whether or not the obstruction seems to be clearing.  The less output, the better.  Unfortunately, things have not slowed down at all which means there is still a blockage.

In the next 24-48 hours, the doctors will watch to see if there is any change and then determine what the next step is in regards to care. He obviously will need some nutrition and the only way to get that if he can’t eat the calories is to administer TPN (IV Nutrition).  This completely bypasses the stomach as it is absorbed through the blood stream.  The next issue becomes “for how long”.  And yet another issue is putting in a Gastric tube (G-Tube) to allow the belly to continue to drain.  (Our “fun fact” for the day: We learned that the stomach will still produce bile/fluid whether or not you eat or drink.  It will produce approximately one liter a day.)

The end appears to be staring us in the face, taunting us.  It is daring us to give in.  Yet we still continue to fight, literally, for every possible breath, every possible moment to stay here. 

I am reminded of a church friend who passed a little over a year ago.  We had been told that Mary had yet another cancer (I think she had 5 different ones) and she was in the hospital.  We arrived expecting to find her weak, pale, not doing well.  Imagine our surprise when we entered the room and she was beaming from ear to ear.  It was the same Mary we had grown to love, the one who could talk your ear off, had praise for everyone, full of life and zest.  She had cookies and pastries for her hospital guests.  She told us that she’d been working on her memorial service for quite some time.  She had chosen where it would be (had to be a big church because she expected a lot of people).  She had chosen her music (as a pianist and church organist, I imagine it was hard for her to whittle down her favorites to a choice few).  She had worked as an organist or teacher in a myriad of churches so she had passages and roles for every pastor, preacher or other church leader with whom she had worked over the years.  Moreover, she was so joyful.  She told us she was so excited to meet Jesus and go to Heaven.  She couldn’t imagine a more beautiful place.  She had no regrets.  No doubts.  Just pure Trust in our One and Only Sovereign God. 

I have to admit, I am envious of her attitude.  She seemed to have it all figured out.  She was the most honest, real person I had met in a long time.  She was ready.  I can imagine all the hoopla in Heaven when she arrived.

Shouldn’t that be our goal.  She made being at peace with the Maker look so easy.  It should be.  But I think that so many of us get hung up on other things that it makes it very difficult to be at peace, to come to terms with our own mortality.  We live such involved humanly lives that we don’t want to give that up.  We try to bargain, to deny, to put off the inevitable.  We don’t want to say goodbye.  We are anxious about our loved ones and worry how they’ll be when we are gone.  We don’t want to miss our children or grandchildren’s milestone events – birthdays, graduations, weddings, anniversaries. 

Yet every single one of us will one day make this transition from human life to human death.  Every single one of us.  There are no exceptions.  Most of us do not want to think about it, do not want to consider it, do not want to leave our loved ones.  We fight with all of our might to exist for as long as we can – sometimes even when the odds are stacked against us.

As Christians, why isn’t our eye on the “prize” – a life of eternity in the hereafter?  A life full of goodness and hope, light and joy, of existence in the presence of God and of Jesus? 

Life as we know it will come to an end.  For some it will be sooner than others.  In our house, it is far more likely that George is transitioning sooner than later.  There is nothing we can do to stop God from reaching down his hand and taking George home… when it is his time.  Nor is there anything we can do for anyone – for when God takes someone home, it is in his time.  There is no obvious rhyme or reason (at least not always) – it just IS. 

As we prepare to transition to whatever is next for us, we must deal with all of the emotions that go along with it.  My prayer is that we can do it with as much grace as we can muster up.