The “C” Word – Day 84 First Surgical follow up

We did lab work yesterday in preparation for today’s appointment.  While some of the chem levels were high or low, they were just .1 - .3 off the “norm” so nothing worrisome.  The surprising thing was to see the potassium levels were high – that is a first since we started all of this.  The doctor said he ordered the labs to see how George was tolerating the Lasix (to relieve the edema).

When George got up this morning he had another part of the stitch line that had opened up and had a good deal of bloody fluid on his clothing.  After his shower I carefully covered that and was glad that we had an appointment today.

Upon weigh in, George is now under 200 pounds.  He probably has not seen that weight in nearly two decades.  It was also a significant drop from just 10 days ago when we were at the oncologists office. 

The doctor came in and discussed how things are going.  He did say that the recovery is going a bit slower than expected…. He expected slow but this is a little bit more.  We talked about the breathing issue and he said we should get an xray by Sunday or Monday in order for the oncologist to look at the scan on Tuesday and determine if there is fluid around the lungs again.  He said to wait a couple of days before doing so to see if the Lasix will release fluid or not.  It is not unusual for fluid to build up after having it pulled off once (which George had done on the day we were released from the hospital). 

He looked at the now-open wound and stuck a q-tip deep inside and said that the wound was clean.  He showed me what I was going to have to do in order to ensure that the wound stays open long enough to heal from the inside out.  Kind of gross.  I had to stop and buy a ton of gauze on the way home in order to do this procedure.  I hope my stomach can handle it.  Otherwise I might call my nurse-neighbor over to give me a hand!!  [I can remember when Mike had a large sunburn boil on his shoulder that he wanted me to ‘pop’ and got nauseous just thinking about it – fortunately in that case it broke on his own so I did not have to do it.]

The doctor asked George how often he ate and George said, “three times a day”.  He told him he needs to eat six times a day and that he should always have some sort of high protein snack or similar thing with him at all times.  He said George should set a timer to go off every two hours to remind him it is time to eat something.

After our appointment we went over to CancerCare Point, a non-profit that supports cancer patients, survivors and caregivers.  We need to “plug in” there for some support.  As we spoke with the social worker there it was evident to me that I am not dealing as well as I think I am.  Like George, I am very independent and do not like to acknowledge the fact that this whole ordeal has been more difficult than we both realize.  I don’t like to admit that I am not as strong as I look. It has taken its’ toll on us physically and emotionally.  Our feelings are just beneath the surface. 

It is also evident that I need to take better care of me. While work is my daily “escape” from the doldrums at home, it is work.  I have pledged to get back to starting my work outs next week.  I am signed up for the monthly caregiver support meeting next Wednesday night, and the social worker signed me up for a free hour long massage next Friday afternoon at the center.  Being with other caregivers will be an outlet for me and will give me an opportunity to meet other people dealing with cancers.  Ours is a bit more unique but there will be some similarities.  When George is ready, he too will do some of the activities that the center has to offer.  It may be awhile for him – he will not be driving for a bit still.  He has a journey to travel still in order to get his strength again – but he will need the support of other “survivors” for his emotional well-being also. 

Tonight is Halloween.  Normally we would sit outside with some props and hand out candy.  But today we got some rain and it is dismal and cold out, so I will be popping out of my chair handing out candy while George sits and watches TV.  We may call it a night early and try to get a decent night sleep.  George was able to “dial down” his CPAP last night and that helped – and the doctor told him he can dial it back even further.  We will see how he does with that. 

Last night, at 2AM, our fire alarm started to beep that it had a low battery…. The beeping continued even after I pulled the battery out so I put it in the garage to let it die down.  That meant that I was awake for a bit last night so I am a little tired today.  Hopefully sleep will not evade me and I won’t be awoken in the middle of the night again!!

The “C” Word – Day 82 New Meds do the job

The main “complaints” I have had recently were that George was still having signs of edema – mainly in his feet.  He also was having continued problems with his breathing.  The other major complaint was getting enough calories in his system to help him build energy.  I was lucky if he ate 400-500 calories a day.  Most days I would estimate it to be under 400!

I contacted the oncologist via George’s online messaging system and told him about the eating issue.  He recommended an appetite stimulant which we finally got prescribed yesterday. 

For the edema I made George contact his surgeon to discuss the issue and, on the surgeon’s request, called their office to get a medication to help with that.  s

So we have added two medications in the past day and a half… and they appear to be working.  The edema in George’s feet appears to be lessening (not only from the medication but from the “physical therapy” I have him doing).  His breathing is still labored – and he tires just walking from one room to the next.  We see the surgeon on Friday and will get that checked out a little further. 

The medication for the appetite is working as George did spend some time “scrounging” for food.  He snacked on crackers in between meals.  He ate a rather good dinner tonight.  Every little bit helps.

I asked George about how much time he spent out of his chair today and he replied “five minutes”.  I told him he should be doing more than that in a day.  I encouraged him to walk around outside tomorrow as the weather has been very nice (and it is supposed to rain on Friday).  He needs to get on his feet and get his muscles working!!  I know he had a big surgery but it has been a month now (can you believe it) – and feel that five minutes of getting up and moving around is not very much for this point in recovery.  I wonder if the surgeon will agree.

Tomorrow evening we get labs done for the Friday appointment.  It will be interesting to see how different they are from last week’s.  We should see some good improvement.

The “C” Word – Day 80 Many roles of a spousal caregiver

I have discovered that when going through a long and difficult disease that spouses must take on many roles.  Each of these in and of themselves is a stressor – so when you have to be all of these in combination it is no wonder that we have “break downs” on a somewhat regular basis.

Cheerleader (aka encourager):   “Come on honey, you can do this!”, “Just one more bite!”, “Yeah!  You did it!”, “Just walk around the room one more time!”  From the initial discovery when we are trying to get them to remain hopeful to post surgery “atta boy” when you get them to do that one extra step to help them recover, our spouses need constant encouraging and reinforcing that they are moving forward.

Advocate (aka decision maker): I learned early on that I was going to have to take the reins on a lot of decision making.  That was evident when he was not sure about making an appointment with a surgeon that he had never heard of because he was sure there were no experts in our area.  Since then I have had to make or help to make many decisions.  I had to learn how the systems work in the medical industry in order to know what to do next.  In the hospital I had to maneuver my way around the medical personnel and help him get the care he not only needed but deserved.  This was probably the hardest thing to do as each shift brought different staff with them and that changed constantly.  George was too tired and too confused to make any decisions on his own and being with him 24/7 was the only way I could ensure that I knew exactly what was going on with his care every moment of every day in order to understand where he was in his recovery.  Now, nearly four weeks post-surgery, I am trying to get him to take over some of the advocacy.  While it is sometimes easier for me because I do not have a problem contacting his doctors, he needs to be urged and prodded to take those steps because he is still uncertain as to what he needs to do or should do. 

Educator : Arming myself with enough knowledge to know what the choices are.  Does he need more medicine or a follow up appointment?  What are signs and symptoms I should be watching for?

Nurse:  In the hospital I became the nurse, helping him to and from the bathroom… bathing… changing beds and pads and gowns… adjusting pillows… The only thing I could not do was administer most of his medications.  There were a couple of them that they allowed me to help him “get down” as they required mixing and giving to him with his meals which he received irregularly.  Once home I needed to keep an eye on the stitch line and when a few areas appeared to separate I had to dress them and keep an eye on them regularly.  I have to keep an eye on the edema and remind him to move his TED stocking periodically to make sure he doesn’t cause more damage. 

Pill organizer and pill pusher:  I have had to learn how to maximize his pill taking on a daily basis.  Trying to figure out how to get them in during waking hours if possible.  But, sometimes that is not possible so I have had to set my clock to wake me up at 2AM in order to give him a medication.  Setting my phone clock to go off up to five times a day in order to remind him it is time to take pills…. And then ensuring that he takes the right ones.  He has no idea what I am giving him or for what most of the time.  He blindly relies on me to make sure he is taking his medications and needs them set up so when he is on his own during the day he knows what he needs to do.

Master calendar keeper: Beyond the pill keeping is the need to keep the calendar for all appointments.  I have done this since the initial diagnosis as his brain cannot keep track of any of that.  “Just tell me where I need to be and when.”  He has no desire to keep track of his calendar.  I just need to go over it every few days and remind him of any upcoming appointments.  However, he often does not remember exactly when they are.  Today, for instance, he knew we had an appointment this coming Friday but he does not remember what time it is even though I have probably mentioned it a few times.   Oh, by the way, I do not keep track of calendar events via a smart phone or electronic method.  I am strictly an “old fashioned” gal who keeps a small calendar in my purse and transfers that to a desktop one at home from time to time. 

Physical Therapist (aka creative engineer and massage therapist):  The only PT he got at the hospital was to make sure he could walk enough to be able to get around at home and to climb a flight of stairs.  Once that was accomplished they signed off and said “he’s good to go!”  Once we arrived home the harsh reality sets in and he barely walks around and, though he can climb stairs, after two weeks at home that is still a taxing event.  He needs continual reminding to use his Spirometer, to move his joints and legs around so that blood keeps flowing.  I have given leg massages to try to move the fluids in his feet and ankles around.   I realized that there were things he could do with a “yoga strap” or flex band to help keep his ankles and feet moving more while he sits in his chair.  I am continually looking for ways to ensure that he still gets some activity and that there are things he can do while being sedentary to help in his recovery. 

Suffice it to say, with all of those things going on it is difficult to find the time to just “be me” or to just “be a wife”.  I know in a prior posting after one of my rants that I said “I just want to be a wife” – and that is so true.  I am sure I am not alone in this.  And this is something that happens in all marriages – that there are periods of time when you are constantly in demand for things other than that of “wife”… when you have young children you have demands that make it hard to have “couple time”.  This feels sort of the same… for now I have a “child” in the house that needs a lot of attention, requires a lot of time to care for as cheerleader, advocate, educator, nurse, calendar keeper, physical therapist, etc.  I am sure there are things I am leaving out (like chief cook and bottle washer) – and there are the normal day to day things to take care of (bills, household chores, laundry, yard work) which get pushed aside to some degree.   The scales of balance are tipped so far off it is no wonder I fall off the edge now and then. When something happens that throws me off course just that “little bit more” it is no wonder I rant and rave.  I guess that is my prerogative.   Most of the time I do okay – aside from being a bit tired it has become somewhat routine.  But it is also why I am trying to get George to start re-focusing and learning how to do some things for himself again.  Again, I have to be creative – or I have to create workable “lists” for him to work from so he is reminded about doing those things that are important for the day.  But each little thing I can get him to do for himself allows me to get back an extra few seconds in my day.  I need him to be proactive, not reactive – because having to react when things get bad totally throws off my balance.

My goal for next week is to start getting back more into MY routine which means getting in at last two small workouts a week until I am back to regular workout schedule.  This week I am still catching up on all the sleep that I lost!!

The “C” Word – Day 78 Turning around

I am hoping that we have started to turn the corner.  Things have been improving ever so slightly.

It took a full day or two for the Benadryl to wear out of George’s system.  Although the transfusion may have given some energy because it raised his blood count and helped with the anemia, the Benadryl gave him less energy to use. 

On the plus side, the mouthwash and pills for the mouth sores has had very good results.  The lips and tongue are nice and clear.  It will take a while for his taste buds to grow back but every once so often he gets a sliver of taste.  He is still not eating a lot – under 500 calories a day is my guess.  He is getting cravings – but can only eat small amounts of whatever it is. Today it was a bagel with shmear from Noahs’ Bagels.   I told him he needs to promise that he will have at least one nutritional drink a day whether it is Ensure, Ensure Clear or Muscle Milk.  Or maybe his mouth will be up for a good Jamba Juice soon.  That will help!!

He still is getting edema, mainly in his feet – and usually one foot or the other, not consistently the same.  He keeps them somewhat elevated all day but a sitting position does not allow them to be higher than his heart.  And he still cannot lay flat so that the feet can be elevated.  However, at night it helps that he is more reclined than during the day.  I have given a few foot massages in hopes of moving some of the fluid around.  It would help if he got up and walked around a bit more during the day and got the blood pumping on its own.  Hopefully as he gets more strength that will happen more. 

Yesterday he treated me and Sara to pedicures and lunch out [he did not go – he helped pay for it].  Something “fun” for me to do as there has not been a whole lot of fun in my life of late.  He recognizes that. We have had some discussions especially when I get very frustrated.  He knows I am trying to help when I nag yet he finds it physically and mentally impossible to sometimes do what I am asking.  I try to back off some but have a hard time finding the balance between nagging and reminding.  He says I did a better job today. 

Today we spent doing a lot of nothing.  Although I slept pretty well last night I am still quite tired.  And he was not able to sleep much at all last night yet he hasn’t done too much sleeping today either.  He catnapped here and there but not really very well.  He is having some difficulty breathing, not all the time but in certain positions.  I told him he needs to be proactive and contact the doctor about any concerns he might have and not wait until whenever the next appointment happens to be.

I find that I am missing sleeping in my bed but with his problems he spends the night moving the head of the bed up and down (we have an adjustable bed) and also has problems with leakage from his mouth when his CPAP is on so it is best for me not to share a bed with him right now.  Until he can roll over and sleep on his side we will be “separate sleepers”.  This, of course, does nothing to appease the fact that we need to experience some “together” time… so every once in a while we might actually sit side by side on one of our couches – it might involve hand holding – and sometimes it might also involve putting soft music on and just sitting with or without conversation.  That’s about the extent of what intimacy will look like in our house for the time being. 

Where we are now is ahead of where we were a week ago.  We still have a long way to go – but we have to accept the small strides.  We wish it would go faster, we are not where we thought we would be by this point in time.  I guess we need to remember to be grateful that we are here at all because certainly, 2 ½ months ago we did not think we would have a chance of surviving this “c” word.  Yet, here we are – and we will come through this. 

The “C” Word – Day 75 Blood Transfusions

Today George spent the better part of the day at Good Samaritan Hospital – but this time as an outpatient.  Thanks to Sara who was able to block out her time to spend getting him checked in and settled in for the afternoon.

He had to be at registration around 11:30 in order to get his blood cross checked at noon.  While they had hoped to be able to start a little ahead of his 2PM transfusion, it took several nurses multiple attempts to find a good vein between his limbs being swollen still and his dehydration.  I think it sounded like 7 or 8 attempts were made to find the final location.  By the time they were able to start it was around 2:45.  Each bag takes about 2.5 hours so he was going to be there awhile. 

Sara helped order up some food for him and said he did quite well at eating.  I arrived around 3:45 to take over.  It was a long quiet afternoon and evening and we managed to get out at 8:30PM. 

I have to say that the outpatient treatment we received on the 5^th floor was far better than our two week stay.  The nurses stayed on top of the process and there was no wasted time waiting for things to be switched over. 

George was more alert when we were done this evening.  Were it not for the Benadryl they gave him at the onset he would probably be even more alert.  The anemia and vitamin deficiency has caused memory loss for George.  He has not been able to remember things well at all unless they are written down.  Fortunately this is “reversible memory loss” if we can get his body to function at a more even keel!  I don’t think I could have two people in this house with Alzheimer’s/Memory Loss!

I hope that a good night of rest will enable him to feel better and stronger tomorrow.  The magic mouthwash is enabling him to start eating more now.  That is a good sign and gives us hope that things will start turning a corner.

The “C” Word – Day 74 Update on oncology appointment

This morning we had our first oncology appointment since the surgery.  George has lost about 5 lbs. since we left the hospital (I deducted a few pounds for shoes since he did not wear them at the 7AM weigh in time at the hospital on the 15^th).  This is largely due to the fact that we are lucky if he eats 400 calories in a day due to the mouth sores.

We covered the questions we needed to ask the doctor and he subsequently ordered prescriptions for “magic mouthwash” containing lidocaine to ease the pain in George’s mouth and also has some antibiotic component I think.  He also order some meds to control what is viewed as herpes of the mouth.  Most of us may have a herpes bug running around in our bodies that remains inactive until something stresses the body out (i.e. surgery, chemo, etc) at which point it decides to rear its’ ugly head.  We hope that within a day or two that these will help ease the symptoms and within 4 or 5 days that it is nearly gone.  Keeping our fingers crossed.

We talked about the fact that this also could have been induced due to a vitamin deficiency given that whatever George does manage to drink has no nutritional value to it.  So he was told to take a multivitamin. 

Because some of George’s blood counts and other things are quite low, doctor ordered up to have 2 units of blood transfused tomorrow.  I called upon my Sara to see if she can drive him over there and get him situated allowing me time to spend with clients as Wednesdays are quite busy.  I will then go over mid-afternoon to check on him and pick him up.  Hopefully that will give him back some energy as well.  Once he starts being able to eat again I hope that his blood levels return to normal so we do not have to keep doing transfusions. 

Stitches are healing okay – even the ones that are somewhat “open” as they are clean drains at this point in time (thanks to advice from our neighbor about how to get them to stay that way). 

The only “down” side of the new meds is that they have to be taken 5 times a day at fairly equal times so I will need to wake George at 2AM to take one of them AND to drink a lot of water.  It is only for 5 days – so hopefully we will both be able to fall back quickly to sleep.  I am still sleeping on the airbed in the other bedroom as George is not able to sleep with his mouth closed since he cannot sleep on his side yet. . . and the CPAP air blowing out of his mouth can be quite annoying.  So I at least am getting decent sleep when given the chance.

Today was pretty non-productive at work since I did not even get in until nearly 11AM. My boss wanted to take me to lunch today so that was a nice long lunch break as well.  We both needed to reconnect as between my time out of the office which was on the heels of her being out of the office for a few weeks has meant that we have barely seen each other for well over a month.  It is so nice to work for understanding people who have become friends over the course of time.  Since we are a small business we all rely heavily on one another to run everything as smoothly as possible.  We are a great team of people.

Praying that between new mouth meds and medications to get rid of the virus, the transfusion, and good rest that things start proceeding forward at a better rate than they have been.  It would be nice for them all to come together so that George can feel human again and thus motivated to start moving around more and more.  

The “C” Word – Day 73 Getting things sorted out

I have struggled the past few days with my own emotions.  I feel as though they are all over the place but they keep ending up in the “down” position.  I have grown weary of trying to get things of nutritional value into George.  I know the canker sores hurt but I feel as though he still should try to get something besides popsicles and slurpees into his system because they won’t help him energy-wise.  I am tired of reminding him that he needs to move a little more.  I told him that he should be able to walk a full circle around the house.  He said “I think I can do it.”  My response, “Thinking and actually doing are two different things.  We can THINK we can do things all day long.” That applies to all thing things he needs to do – using the spirometer, eating healthy choices, walking, etc.  The only positive thing I saw today was that he and his mom walked around the patio for five or ten minutes.  Reminding and prodding throughout the day is exhausting especially when it just pisses George off.   Finally I just put my hands up in surrender and said “I give up!”  I told George that what happens next is up to him.  He knows what he needs to do.  I am not happy with “giving up”, in fact it made me miserable.  But I am it my wits end with the myriad of delays over the past few weeks.  Just as it looks we are moving forward there is another step backward.  It is like an endless roller coaster and all I want to do now is get off.

Last night as I was trying to sort out whatever it is that is bothering me.  It occurred to me that I miss my husband.  My husband has physically been here since early August but emotionally he has been totally absent.  From the two months where fear and anxiety enveloped his entire being to now being incapacitated by various traumas and complications it has been a daily struggle for me to try to keep upbeat, keep him focused, moving forward.  That, coupled with the lack of sleep for a few weeks has left me emotionally drained.  I am exhausted.

George is confused and scared by my 180 degree turn.  I just stopped “doing”.  I went back to work and when asked if I was looking forward to it, my response was “yes, at least there I feel like I am doing some good.”  At home, it does not feel like I am doing good.  At home it feels like I am spending my entire day watching George who is just sleeping, sitting, not talking.  It is lonely.  It has been lonely for a few months. 

My going back to work will force George to get up and do things for himself.  While it may be difficult, I know that he can at least get up and feed and water himself, get himself to the bathroom, etc.  Very basic stuff.  He does not need me to wait on him as much.  The only one that can motivate him at this point is him.  He needs to figure out how to make it all work.  It is time to “sink or swim” – and though I am fearful that he might sink first there is nothing else I can do.

I do not want to be a caregiver – a nurse… I want to be a wife.  And I don’t know how to get that back.  I am having a hard time finding some middle ground where I can exist peacefully. I want my husband back – the one that “sees hill, takes hill”, the one that likes to tinker in the garage, the one that enjoys sitting in the back yard watching the birds and the squirrels, the one that I can make laugh by my silliness.  Smiles are hard to come by.  Creativity has flown out the door.  I know I will not get these back anytime soon by sheer nature of this beast.  But I long for it – I crave it. 

I spoke with George about my concerns and feelings last night.  I am angry with myself for being frustrated and letting things get to me.  I had my pity party for a few hours last night.  I am tired of having weekly meltdowns.  That is just not in my nature as a rule. 

Today we see the oncologist for our first post-surgery follow up.  It is preceded by lab work so we will see how George is faring on his non-nutritional diet.  We will see if we can find out how to get relief from the mouth sores so he can eat again.  We will try to cross this hurdle and hope that it is the last big one we have to endure for a while.  Somehow we have to be able to find our new normal.  We aren’t there yet.  I pray it is just around the corner.  

The “C” Word – Day 70 Slow, steady progress

Today’s goal was for George to get up and move around just a little bit more.  He did so this morning as he made his way to his desk to check on bills, balances, etc.  This afternoon he has not moved too much at all.  We both are still trying to catch up on sleep that we missed for two weeks.  Even I managed an hour and a half resting time during which I may have dozed a couple of times.

Today it was sort of back to normal for me as I had to get Mom up, dressed and driven to SarahCare.  It gave me a chance to go to the grocery store for a few more things while leaving George to his own defenses. 

His biggest problem today is that he woke up with a mouth full of canker sores and sores on his lips.  This has made eating rather difficult as everything stings.  Our neighbor just stopped in and told him to do warm salt water rinses.  Hmm, good idea!

We enjoyed the left over dinner that our neighbors brought over last night.  Decided to do “dinner” for “lunch” and then lunch can be something more simple.

As things settle down I may not journal/blog every day – sort of depends on if there is something to write about.  It is good to feel as though things are moving towards less stress, less activity, less worry.  Moving forward we will still be needing to deal with the aftermath that cancer brings.  How to live with it, understand the feelings and emotions that have been going on and will continue to go on to some degree.  Many deep seated emotions have been in play for the past 9 weeks and some will warrant further observation.  But, for now, we are content with slow, steady progress.

The “C” Word – Day 69 The temporary new normal

We both slept very well last night.  The only time I woke up was when George asked for more blanket on his legs.  You see, he loves to sleep with the fan on at night.  And the night air was chilly (for us) in perhaps the high 40’s or low 50’s – and when you add a blowing fan it makes it even chillier!  Even I added an extra layer during the night.  I am not known for “sleeping in” so when he awoke at 6:30AM and I saw what time it was I was surprised.  I had fallen asleep around 9PM so getting 9+ hours of sleep is extremely unusual for me.  But I am making up for a few weeks of very little sleep.

I had purchased and abdominal binder for him to wear.  It was a size large which said it worked for 42”-52”.  NO WAY!  He is right around the middle of the range for that size wrap – but when we held it up around him it would have had to stretch at least 6-8 inches just to get the two sides to touch never mind have the Velcro touch.  False advertising! 

Today George took his first shower.  We removed the two bandages that are no longer needed and changed out the two on his abdomen that are oozing some right now.  Because he was quite fatigued from taking the shower I served him breakfast – but after that he has been getting up to refresh his drinks and made his lunch.  Although he hasn’t gotten up and walked around too much today, he has gotten up to use the bathroom and do a few things in the kitchen. We both took an hour nap/rest this afternoon but only that once.

Our neighbors, Cathy and Steve, made dinner for us and brought it over this evening.  It tasted delicious (to me) and was quite a nice treat.  Because George is on a different eating schedule than me, he has not tried his yet but will have him to that before we go to bed.  It is still difficult to get a lot of calories in him. 

Late this afternoon I noticed that my throat is starting to get scratchy.  That means I need to buckle down and take care of that right away.  Neither one of us can afford for me to be sick right now.  Fortunately, most of the time I can lick being sick quite quickly so I am hopeful that this will pass soon.  Another good night of sleep is required.  Hopefully Mom will cooperate and stay in bed all night so I don’t have to worry about her getting up and down and waking me up (via the alarm in her carpet). 

I also have to remember that I have to get her up and ready for Sarahcare tomorrow.  I am a little rusty with taking care of her!!  Double duty – but only for tomorrow as Rosemary will come on Sunday and stay with her during the day. 

This will be our temporary normal for now – George recovering and resting, occasionally taking care of mom, taking a little time for me now and then.  As time goes on normal will be redefined until we are able to settle into something a little more long term.  

The “C” Word – Day 68 Home at Last

Hours after my ranting yesterday things finally started turning around.  The nurse on duty called the doctor and let him know that we were frustrated and had really been looking forward to going home.  Given that, with six bags of potassium to be hung, we would possibly not get discharged until 11PM and the fact that this would be difficult to get prescriptions, etc., the doctor agreed to let them finish the bag that was going and then prepare to go home.  This meant that we would be able to leave the hospital about 9PM. YEAH!  So thrilled.

We arrived home and visited with Rosemary for a bit and then headed up to bed.  Pure Bliss!  Sleeping in our own bed – together – for the first time in over two weeks.  It did not take either one of us very long to fall into a deep sleep and get the first extended rest in weeks.

When I woke up I headed down to start some laundry and organize the mail and bills that had come in during the past few weeks.  George came down and settled himself in his green recliner.  Seat comfortably he has spent the day taking naps and watching TV.  I have spent most of the day relaxing as well and doing the laundry a little bit at a time.  Somehow, falling asleep on the sofa is so much better than the chair at the hospital. 

We spoke to the doctor briefly today and he has started having us back off slowly on the anti-diarrhea medications.  I know that he knows I am staying on top of George’s care and believe that is one of the reasons he agreed to let us go home last night.  He knows I will contact them should anything come up requiring attention. 

It is so good to be home.  For George it is especially good to be home since he did not know if he would be coming home from surgery or if he would come home worse than when he went in.  To him, this is heaven on earth.

I am sure that after a few weeks he will become bored (if not sooner), but the doctor told him he needed to perfect the art of doing nothing for a while. Maybe we will call this “prelude to retirement”, haha, as if he ever does retire he says he would spend the first few months doing nothing.  This may change his mind!

The best thing about today is that we are free at last from the bondages of the hospital.  A glorious freedom indeed.   There is nothing better than Home Sweet Home!

The “C” Word – Day 67 Crap – Another Delay

[Note:  Hours after this was written things turned around.  What you see here is my venting of a frustrating day which I am sure is typical of many caregivers in hospital settings.  Day 68 will show what happened after this.]

Honestly, I am so tired of delay after delay.  Just when we think we are going home another glitch in the system.

George had been complaining of shortness of breath for over a week.  Finally the dr. ordered a chest xray on Monday (which took 12 hours before they did it).  Of course, then we have to wait until Tuesday morning to get the results.  At the same time as the xray order the doctor asked for a pulmonary specialist to come in and take a look.  Our doctor suspected fluid around the lungs but wanted the chest xray first to rule out pneumonia.

On Tuesday he asked the pulmonary doctor to come by again and that never happened.  At 11PM last night (Tue) we get news that our doctor had ordered a CT scan with contrast to be done and it was scheduled for last night around 11:30 - - - but of course, with the way things go around here it was 12:45 AM by the time we had it done.  Back to the room at 1:15, get woken at 3AM for regular round of meds, again at 5:45AM for vitals and, of course, we have to get him weighed by 7AM.  All that made for not much sleep again last night.

Normally blood is drawn at around 5AM but that did not happen this morning.  The CNA said that someone started making rounds but got called away.  A phlebotomist showed up around 7:00 and when we told her that we used the PICC line she went to find a nurse.  She never did come back.  So the lab work did not get pulled until just after 8AM. 

The pulmonary doctor showed up at 6:30 this morning and said that they saw quite a bit of fluid around the lungs and would order up a procedure to drain this fluid.  When we asked if that would delay our going home today he said that it might.  But he also said that this procedure is often done as an outpatient.  He did not know how long it would take for them to get George in to have this done.

Our doctor showed up around 8AM and knew about the orders.  He said that we could probably go home today or, if that did not happen the latest would be tomorrow.  It depended on when the procedure was done.

At 11:45 they took George down to drain the fluid.  He returned about a half hour later a bit tender but breathing better.  They drained nearly a 1 litre bottle of fluid off of him. 

It was looking good that we would be able to get out of here by early evening… until the nurse came in around 1PM and said his potassium levels were low again and that they had to hang some bags.  She did not, however, say how many would need to be done.  Again we are thinking that if they start the bags soon we might still make it out of here today.  Around 2:15 she said she had ordered up the potassium and she promised to start hanging the first one before her shift ended at 3PM – and that did not happen (when does anything around here happen when they say it will).  The change of shift happens and we still have no word from the new nurse about what is going on.  I finally flag someone down to find out about getting the potassium hung.  She finds a nurse who finally comes in to start hanging and says we have six bags of potassium to hang.  SIX!  That is AT LEAST SIX HOURS of hang time – and that depends on whether or not they change the bags on time.  And that never happens of course.  So another round of delays and I am just so tired and frustrated.  I want to go home!!  

We could have caused part of this problem ourselves (potassium deficiency) by not insisting that George take his nutritional supplements while he stayed here. They arrived every day like clockwork and he brushed them off.  He even made the doctor change the kind of supplement to one he liked but then decided he did not like those either.  That makes me angry – but George is a grown man making his own decisions…. Even though some of those decisions are clouded in judgment because he has not been feeling well.  I am kicking myself for slacking off on the nutritional supplements but I grew weary of trying to force feed him so I stopped. 

The other bothersome thing is that at home we will have no idea if his potassium levels are low.  There are foods that can help but only if he will actually eat them on a regular basis.  Even then we will not know if it is enough.  He has been eating here but only just barely three small meals a day – and none of them potassium rich foods of course (then again, we have not been especially pleased with the quality of food here).  His “tasters” will be off for a few weeks so the interest in food is still not there – it is better than it was but if no food were presented to him he would probably be find with that. 

I think George would be okay with being here another night if not for the fact that I am so upset by this.  Time has just passed him by these past weeks and, though he is tired of being here he seems indifferent in some regards to having to be here another night.  Yes, he is disappointed, frustrated, etc. but honestly he is not as upset as I am.  Then again, he has lost all sense of time and does not remember much about the first ten days here.  The passage of time from one day to the next is not happening at a normal rate of speed for him. 

 I know I should be grateful for so many things… and I am… but today is yet another one of those days when the physical and emotional fatigue are outweighing everything else and caused by yet another delay.  I think this is the third time since we have been here that I have had a melt down – and I know that most would not judge me because of it given the pressures of the past few months.  These meltdowns make me feel selfish for wanting things to go “my way” when I have absolutely no control over the circumstances.  But I feel that my frustrations are valid ones especially when it comes to delays that are preventable.  It is not like we have never voiced our concerns or that we have left the premises so they can’t find us to take care of them. 

At any rate -  I am beyond tired of these walls.  Beyond tired of waiting and waiting and waiting for things to happen.  Tired of the pressure of being an advocate and having to push and prod to get any answers. Tired of tracking how many times George uses the bathroom.  Tired of waiting for the next delay, the next crisis. Physically, mentally and spiritually I am so drained right now.  When does it end?  

The “C” Word – Day 66 Quiet Day of Anticipation

For the first time in two weeks, George got a decent night of sleep (in spite of the usual night time interruptions).  Also, for the first time, he was not hooked up to any IV nor did he have the little bags hanging off his belly.  This enable him to sleep any which way he pleased.  The nurse put my “Please Enter Quietly” sign on the outside of the door. 

He came to some level of consciousness whenever they came in to do vital signs or give him meds, but quickly covered his eyes back up with a small towel and went directly back to sleep. 

Dr. Bastidas came in at 6:30 this morning for a quick check. He noted that the xray was clear. We chatted about George’s breathing issue for which he said, “the lung doctor did not come yesterday?  I will put it in again today.” [Note: It is 7:30PM and we never saw anyone today either.]  He said we would be going home tomorrow.  We talked a bit about the diarrhea issue and he said that the antibiotics can cause it so we were working a couple of battles at the same time.  The meds for diarrhea will be backed of slowly over about thirty days as George’s body starts to function in its’ new way.  The labs from 5:15 had not been completed yet so we did not know how they looked.  We found out at about 10:00 that his calcium was low so a bag was hung and George was tied to the IV for about an hour and a half today.

We managed three walks “around the block” today, each one appearing to be a little bit easier than the prior one.  George doesn’t like having to walk but he knows he has to do some in order to help his body. 

Bathroom breaks have been almost nil today – such a far cry from a few days ago.  We have to be careful that we don’t go from one extreme to another. 

In anticipation for the homecoming tomorrow I took a break this afternoon to go the grocery store and stock up on a few things.  Lots of fruits (so I can make our own smoothies), some cereal, bread, soup.  Very basic things for George to eat.  Took advantage of being home and stepped into the shower as a treat for me!  Picked up McDonalds for late lunch/early dinner.  George had ordered French fries for lunch from the cafeteria but they were cold and rubbery on arrival.

He has been more alert today and spent more time watching TV or daydreaming.  His voice was a little bit stronger today although it becomes strained if he tries to do too much talking.  He is looking forward to sitting in his recliner at home and not being bothered by the flow of vital signs, blood work, etc. 

I am not sure what meds we will be prescribed upon going home as some of the things he receives here are via injection (blood thinners). I assume that the same schedule for some of them will continue at home which means waking him up in the middle of the night to take them.  That will ease up over time.

So this is our last night at Good Samaritan Hospital.  George and I agreed that the best we could give this place is a C.  The choices of food that George has had are mediocre – mostly due to the fact that the food is cold when it gets here, or the breads are dry.  The staff are scarce a lot of the time.  The response time to calls is very long.  It is not like we called very often as I was doing most of the care to begin with.  We only called when there was something that I was not allowed to handle. 

We have spent a fair amount of time waiting for something to happen or someone to stop by (xray tech, specialist, etc.).  We did see a care specialist while in ICU but have not seen anyone since.  We will report the issue with the bed either when we leave or once we get home. 

It has been a LOOOOONG two weeks since surgery.  Tomorrow the next phase of journey begins.  The journey of home recover and learning to live with new changes to George’s body.  It will take some getting used to.  The first few weeks he will probably want to stay within the confines of the house and back yard.  We will have several doctor appointments I am sure (I know we already have one confirmed for next Tuesday.  This is our new life.  One filled with on-going doctor appointments, tests, adjustments to diets and so on.

We have to agree on one thing – that we should be grateful that George is alive, that things went well in surgery and that George is on the road to recovery. For that we give thanks and praise.  

The “C” Word – Day 65 The End (of the Hospital Stay) is in sight

Finally, all of the medications George has been taking are having some effect.  The bathroom trips subsided quite a bit over night and we both were able to stay in bed and relax (as much as is possible when there are things happening around you all night long).  Although we had to wake up for a short while to do meds this morning, we went back to bed and back to sleep.  Didn’t get up until nearly 6:30AM!  What a “treat”!?!?

Early morning blood tests showed very low levels of potassium (still) and 8 bags are ordered up to take via IV.  Those started at 9AM and we are just now on the last bag.  It only takes about an hour for each bag but the nurses do not come around to check them every hour.  As a matter of fact, we were the ones to call them at least 4 times today to let them know a new bag could go on.  We are nearly done with the last bag and then he will get a final IV drip of antibiotic.  Once that is done (hopefully by 10:30) he will be unhooked for the rest of the night. 

The doctor came in this morning to see how things are going.  He removed the staples AND the GP/JP? Bulbs that came out of the belly.  Coupled with the fact that the IV will be off for most of the night means George is free to roll around in bed a little more freely and maybe even sleep on his side. 

We talked about what the plan was going forward and he things that if we can get the potassium level under control that George could go home as early as tomorrow (would be late in the day I presume) but we are thinking in may be Wednesday.  At any rate, the time to go home is looming on the horizon without a stop in rehab before doing so.

The other thing of concern is the fact that George is still having trouble getting good breaths.  He still labors a lot even when being still.  When we go to walk around it is even more pronounced.  The doctor did a couple of taps on his back and thinks there may still be some fluid retention around the lungs.  He ordered up a chest xray and is asking a lung doctor to review the results and come check on George.  The chest xray order went in at 9AM and they finally came up to get him at 8:20PM (and I only think they did that because I asked the nurse to check to see if they were still going to do it tonight because George would like to get into bed!). 

In the morning they will do labs at 5AM again and we hopefully will the lung doctor will visit us in the morning so we can see what is going on and determine if there is anything that can be done to help relieve the pressure on the lungs.

Other than that it has been a relatively calm day.  George is still eating well enough for where he is post-surgery.  His bathroom trips are FAR less frequent and producing far less outgo which is good.  This has allowed him to take a couple of naps in bed during the day.  I think I may even have taken one in the calm of the afternoon. 

Once they do the evening meds in just a short while we will hook up George’s CPAP, I will pull open my bed and we will try to get some more much needed shut eye. 

Soon enough we will be home and resting in our own bed or our own living room and I can actually get some things done at home that we have been neglecting.  This includes seeing if the hummingbirds will come around since their little feeders have been empty for a week!  While it won’t be “business as usual” at home, it will be a welcome relief to be home… sweet home.

The “C” Word – Day 64 Day of Rest

Finally, all of the anti-diarrheal meds are having some effect.  However, as previous nights have shown, by the time we get to sleep it is nearly midnight and our first wakeup call is at 3AM for the meds once again.  And as soon as he wakes up he needs to go to the bathroom – with the bedpan.  That means that I am up and out of bed as well.  Another early start to the day.  As we did yesterday, he sat in the chair for a little while and eventually wanted to lay down as he was simply exhausted. But he couldn’t get comfortable in bed either as the mattress sunk down low where his butt was.  I figured out a way to have him sit in the chair that converts to a bed but left it in chair position.  We placed a lot of pillows around him and soon he was dozing on and off for the rest of the morning.  The good news is that his bouts of using the bathroom have dwindled by perhaps half today – still a lot but for us is better than before.  So he can stay put for longer periods of time and get some rest. The hard part for him right now is that he doesn’t know if he just has to pass gas or go to the bathroom.  To be safe, he goes to the restroom.

Though early in the day I attempted to get some additional rest, it was not to be.  Once he was settled into my cozy chair I was not going to be able to get any sleep or close my eyes.  I feel as though I am the mother of a young baby and have gone into that mode of being able to function with very little sleep and, even then, that sleep is constantly being interrupted.  There are moments during the day when I can feel my eyes fighting to stay open and my brain trying to shut down so I have to find ways to stay awake. The moment will pass and once again I will do what needs to be done.

George ate more today.  Two boxes of Rice Krispies for breakfast, two bowls of soup for lunch, another Jamba Juice smoothie and, tonight for dinner a half sandwich from Panera’s with some fruit.  The good news is that there were a few things he was actually able to discern what the taste was.  Apparently in order for him to ‘blow this joint’ he has to produce some solid BM material – so I think he will need to increase his intake in order to do so.  It will be a balancing act for awhile to find the right dose of anti-diarrhea medication and prevalite (referred to by the nursing staff as cholestyranime) to get his intestinal tract to learn how to function on less than 100% capacity. 

What does this mean in relation to looking toward a release date is anyone’s guess.  The doctor’s partner came in today and made some mention of a meeting perhaps tomorrow with the hospital staff to go over what the next step(s) will be.  I have a feeling there may be some rehab time for George and then I have to figure out how to handle that type of change with my own need to get home and take care of things there.  I hate feeling the push and pull of where to be.  Having observed how things are handled here at the hospital there is no way I would leave George alone for any length of time.  He is not able to remember details of what is going on with his care and what kinds of meds he is taking.  He cannot keep track of how many times he has gone to the bathroom in order for the staff to record it.  While he can do okay alone for short periods of times, he requires some help with his personal care and the staff are so busy you are lucky if you can get them to respond to calls for assistance in under twenty minutes.  I can see the importance of having an advocate in the health care system.  I wonder how others in similar situations (extended hospital stays) do it?  For me it would require that I feel that the staff on hand are available to quickly respond so I have some trust that they will provide great care.

Sometimes I wonder about things at the hospital.  For instance, over three days ago a wound care specialist came to check George’s rather tender behind.  She ordered up some special ointment and then requested a different, better bed for George.  They were able to find said bed and made the transfer.  The mattress was poor quality as I stated above.  For three days George has struggled to find a comfortable position in this bed and his tail bone is also now very sore.  We couldn’t figure out why they felt the need to change beds because this certainly was not better than the previous one.  We made mention it to one of the nurses this afternoon and asked if he could get a different bed because this one was so bad.  She walked over, flipped a cover on the base of the bed and turned it on.  It turns out the bed is one of those where the mattress is constantly inflating and deflating in order to help patients not get bedsores.  It moves rather randomly all the time to provide relief.  Again, I have to say WTF??  How could he have gone three days and not one staff observed that the bed wasn’t turned on.  The staff that brought it in should have turned it on right away!  Geesh!! (And, the ointment for his bottom took over 12 hours to be processed and brought up to us.  We are not allowed to administer it ourselves.  Only the staff can do it and he is allowed one application per shift.  Each time they administer it they have to scan George’s wrist band and then scan the tube of ointment.  Are we being charged by the tube or by the application??

While George has been free of an IV all day today, since they did not do the lab work until late this afternoon we just found out his potassium levels are low (still) so he will soon be hooked up for at least a few hours to the IV unit.  At least he is having to use the restroom less so we don’t have to worry about the constant need to pull that thing around the room to do so. 

I have a feeling tonight we may actually be able to get a decent sleep.  If we go to be around 9, just after evening meds are administered, we will have 5 hours of quiet.  Assuming that the Immodium and other medication is doing what it needs to do, George may be able to stay asleep for a longer period of time.  With his bed now properly functioning the bed should be relatively comfortable. 

I will end today’s blog with a haha moment.  Last night when we were readying to put the CPAP unit on, George decided to use one of his chin straps from home.  He put it on and said, “Geesh, this thing is all stretched out, it doesn’t fit!”  I looked over at him and laughed and said, “Honey, the strap did not stretch.  You have lost a LOT of weight including in your face!”  He found that unbelievable.  He did weigh another 4#’s less this morning for a total loss from original weight of about 14 pounds. He is only now beginning to see the change in his size. I had told him he delivered a good sized baby and had guessed he lost somewhere in the range of 15-20 pounds just based on the belly size before and after.  As he finally disperses some of the remaining fluids from surgery his actual weight is now showing up. 

Tomorrow I will work on building up his strength again.  I hope to be able to get him to walk up and down at least a few of the stairs.  As reluctant as he is, he is now realizing that he needs to do these things to help his insides get back to the business of working.  

The “C” Word – Day 63 Anniversary and Graduation Day

We went to bed relatively early last night to try to catch up on some sleep.  At first it looked as though I would not get much sleep as the need for the bedpan was quite frequent.  Finally, just after midnight things calmed down and we slept for a few hours.  But, today our day started once again very early.  I think it was around 3AM.  George awoke to use the bed pan.  Shortly after that the nurse came in with his anti-diarrheal mediation.  Then George asked for a popsicle to start the day off. 

A little bit later he wanted another popsicle so I told the CNA that he needed to get weighed before he started eating and drinking too much.  His weight this morning was six pounds less than yesterday morning.  This means more of the liquids that have been in his body are finally starting to shed and/or absorb into his system.

It did help that he was able to lay nearly flat all night along with wearing the TED (Anti-embolism) compression stockings to help get the swelling down in his calves and feet.  While his feet still have some swelling the calves were visually smaller than yesterday. 

George was ready to order breakfast quite early (too early to request it) so we looked at the menu and he decided what he wanted.  He ended up choosing Rice Krispies with a carton of milk, a blueberry muffin, and a fresh cut pear.  He managed to eat all of them despite the fact that his tongue is still suffering the side effects of the liquid potassium he had to drink the past two days.  As he was drinking water this morning he wiped off some residue that looked like small sugar crystals from his tongue.  He says that is like a layer of tongue that was chemically burned from the potassium. 

George’s spirits were more uplifted today.  Partly due to the fact that he is using the toilet slightly less than yesterday.  When the on-all doctor for our surgeon came in to check on us, he asked if the anti-diarrheal was working.  At that point George was only going about once an hour.  While we seemed happy about that, the doctor looked quizzically at us as if to say non-verbally “you’re kidding, right”?  He then wrote orders to up the dosage so that the once an hour will become even less.  George’s potassium levels are still very low as he is unable to hold that particular element in his body for any length of time. 

Keith and Bonnie came today and brought George a Jamba Juice.  This tasted really good to him and ended up being his lunch.  They also sat with him a spell to enable me to run home to shower, check the mail, change out a few clothes, etc.  Bonnie also massaged his swollen feet and hands.  She felt good that she could do something to help him out. 

I managed to get George to take three walks today, each one progressively longer than the previous one.  He still runs out of breath and is tired after each one, but he is able to do it and that counts for a lot.  The physical therapist (my favorite one, Julie) came at 4:30.  George was reluctant to go as we had just gotten back a short while earlier from our longest walk of the day.  I told her that I hoped she could practice stairs with him today and she replied, “absolutely”.  It turned out that her practice stairs were buried in a corner so she took George to the real stairs down by the nurses’ station.  They returned to the room to review how to get in and out of bed, after which Julie declared, “You are done!  You don’t need me anymore!”  We chatted with her for a few minutes.  George expressed his appreciation for her help.  I told her I wanted to bottle her up and take her home.  She said she was glad to work with us and said that the next time she saw us she hoped it was in a restaurant having a good time.  She had thought that George would have been gone and off the schedule by now so when she saw his name on her roster she said, “I am going to make him my last client of the day because I know he will do beautifully.”  After she left George broke down in tears he was so happy that he had “passed” the test by being able to climb a flight of stairs.  He now knows that once he is physically stable (internally) that he is capable of making it to and from our bedroom on the second floor. 

Today was our 12^th anniversary so I decided that we would try to eat our dinner together.  We ordered up George’s (soup, salad and fruit) to come around 5PM while I ran down to the cafeteria to get myself dinner (I had previewed the menu so knew I would enjoy this particular one).  We sat across from one another for a meal for the first time in several weeks. 

I have seen George smile more today and engage in conversation more today than I have in months (ever since the diagnosis).  While it has not all been a bed or roses today, we have crossed a major hurdle and are now on the down side of this huge hill that once looked insurmountable. 

Graduation Day (from physical therapy) was the best anniversary present I could ask for.  Seeing George smile today – well, that was pretty sweet as well.  This may not be the place I would ever want to spend an anniversary, but as long as we are together it does not matter where we are.  

The “C” Word – Day 62 Praises, Prayers & Answered Prayers

Despite the fact that they started George on anti-diarrheal meds at 11PM last night, the problem still persists.  The first dose did, however, enable us to get two hours of sleep before the first wave hit, and another each hour and a half later.  At 4:45 or so the brigade of early morning staff began.  First the nurse to do vital stats and shortly thereafter the first blood draw of the day.  By that time George was awake and our now daily routine of frequent bathroom bouts began. 

George decided this morning while sitting on the commode at 5:30 that it was time to try to shave.  He sat in a chair and between the two of us we managed to get rid of the majority of the stubble that had grown over the past eleven days.  Fresh face scrubbed clean did a lot to help his spirits during the early morning hour. 

There are orders for George to be weighed every morning before he gets anything to eat.  This morning, that happened at 5:15 after the first potty break of the day.  He has lost 5 lbs. from where he was yesterday and is now about 4 lbs. under the weight he was at home prior to surgery.  (In my estimation he should eventually be at least 8-10 lbs. less considering what they removed from his body.) 

George expressed a desire to try to eat something so we ordered up Texas French Toast and a cup of hot tea.  He managed to eat one of the two slices of toast and the tea.  Progress is made.  We now received calls from “room service” if they do not hear from us by a certain time of day so as to insure he orders something up to eat at each meal.  While he may order it there is no guarantee that he will actually eat any of it, but order it we must.

Eating is still difficult for George as they are making him orally take potassium three times a day.  For those of us who have never tried it, apparently it has a very strong taste, seems to destroy ones’ taste buds and alters the taste of anything and everything.  This has made it very difficult for George who wants to put forth an effort to eat but feels like his tongue is burning. 

After an extremely difficult night, I made the decision that George lay back down at 9:30AM and try to get some rest.  My thought that was perhaps I would get a nap in as well.  It took some time for George’s body parts to allow it, but eventually he fell asleep for about an hour and a half and I dozed off as well.  I even turned down physical therapy (which I hate to do) but today the requirement was to get much needed rest, get George’s feet elevated because he has severe edema in his feet, and get him off of his very raw butt.  Note: I had to tape a sign on the outside of our door asking staff to please enter the room quietly. That did help some. 

The morning nurse lets us know that George’s blood count was low as was potassium, calcium and magnesium.  The latter three will be taken care of by an IV drip.  The first one will require a blood transfusion of one unit during the day. 

While I sat around all day waiting for the doctor to show up, he never did come by.  Yesterday when I phoned his office to see if they knew when he would do rounds at the hospital they had absolutely no idea. Some of the nurses here have told me that he comes by every day.  There is no rhyme or reason to the timing.  He may show up in the middle of the night, the early morning, late in the day.  I don’t know if he will show up sometime tonight or not.  We do know he gets updates from the nurses on George’s conditions and sends order changes, etc.  We just would like to ask a couple of questions that come up during the day.

George made a decision this afternoon that he hopes will give us some relief tonight.  It will probably give him more relief than me.  Because it is so tedious to get in and out of bed with the constant diarrhea, quite often today he had more gas than actual “stuff”.  Tonight I have put down several layers of chux. Should he just pass gas, no harm no foul.  Should it not be just gas, I can pull out a chux and clean him up.  We are attempting to use the bedpan and from 7:00-7:45 used it four or five times.  Each time I had to take it, empty it, clean it, dry it – so you can see why this is more for his relief than mine.  We just asked for some medication and hope that this round has some affect.  Not counting the bedpan usage there were 26 trips to the bathroom since 1AM.  And the day is not over yet.  I am afraid to lay down and get comfortable because just as I do it will probably be time to jump up again.  It is a vicious cycle – one I am longing to come to an end.

I want to take time out to give thanks and praise for some of the progress made over the last day or so.  First, we received the news that the stool sample came back negative for CDIF.  This was a HUGE relief for us as that is a very difficult bacterial infection to battle.  Secondly, the fact that George has had very few incidences of nausea since yesterday.  [He is experiencing some tonight but this is the first time since last night that he has had any of consequence.  He did experience some vomiting after the blood transfusion but that is a possible side effect of that procedure.] Thirdly, he is able to eat a little bit and keep it down.  Fourth is the fact that he can walk around without the walker.  He does get winded easily but he can do it. 

We need to continue to pray that this incessant diarrhea lets up.  It has been an exhaustive three days of it.  [See next paragraph – again, answered prayer.] We pray that George’s blood tests in the morning show that his potassium levels have increased so we can cut back on some of the potassium.  If we can do that, perhaps his taste buds will come back and he will feel more like eating – and that will most certainly help him recover more quickly.  The diarrhea and low potassium are directly linked so the “stoppage” of one should lead to the stoppage of the second.  We both need some honest resting time. [More answered prayer – the doctor just told us he will take him off the oral potassium and just do it via the PICC line.]

It is 8:20PM.  The doctor just arrived.  We told him how our day went and that the meds for diarrhea are not working.  He said that since the test for CDIF was negative he could be more aggressive with the meds for the diarrhea.  He said that there was a bladder infection and he ran a round of antibiotics for that today.  We let him know that, although he had told us that the PICC line could be used for blood draws, the staff said it was not in the orders so they refused to do so.  He did not know he had to put an order in for that and said he would try to figure that out. 

George is starting to nod off.  I can tell because his mouth starts opening and fluttering from the push of the CPAP machine.  My poor tired baby. 

It appears that tomorrow will be a better day now that prayers are being answered.  Could this be the turning point?  I sure hope so.  All we both want to do is get back to our own home and our own beds.

The “C” Word – Day 61 How do you spell Relief?

Today was a repeat of yesterday to some degree.  Starting at 4AM and using the bathroom a record 31 times in 17 hours.  While I was grateful that I did not have to go in to work today, it has been a workout for me as well as George today as every time he goes in, I have to go in and help clean him up.  To say this was exhausting would be putting it mildly.  Especially in the early morning when each time I decided that I might lay my head back down it was time pop up yet again – so I gave up on that idea.  A test for CDIF is being done and we are praying for that to be negative.  Not to be too graphic but needing to be open about this whole process we are going through, there is some solidification occurring these past few times which I believe to be a good thing.

To think that I had plans of things to do while I sat here in the hospital – crochet, read a book, etc.  Not getting any of that done at all because of the constant interruptions throughout the day and into the evening.

We did make a list of questions to ask the doctor when he came in.  We are concerned about the constant diarrhea and the peaks of nausea.  We are concerned about being able to stomach the nutritional supplements so he is not getting enough calories in the day because he is still not eating much.  He has not vomited today so that is a good thing but he is very gassy.  I expect that some of that is from not eating but cannot convince him to eat anything.  Nothing has any flavor to him right now and coupled with the fact he has no appetite is not helping at all.

The doctor was not totally concerned about the bathroom trips.  He wants George to eat and get the nausea under control before he tries anti-diarrheal medication.  Gotta get the input under control before dealing with the output.  His potassium levels were okay this morning.  He just got a PICC line that they can use to do IV pushes of potassium and also blood draws so they can stop poking the same place in the same arm.  That will be helpful. 

The doctor was aware that George’s bottom is quite raw.  I inquired about getting a sitz bath.  (When I told George I was going to inquire about a sitz bath he said, “I don’t think I can get in a bath tub.”  He did not know what it was.)  He has come to appreciate that I thought of this wonderful thing as he is enjoying the benefits of it.  How do you spell relief?  S-I-T-Z! 

George took time for two pacing walks around the room (safer that way because the bathroom is close) and one long walk down the hallway with the physical therapist.  With the exception of a short part of the long walk, all of it was done without the walker.  He also walked to and from the bathroom no less than 27 times in a 15 hour period without using a walker as well.  That’s a lot of walking.

And, though George awoke with some nausea and has received a few shots for it, aside from three dry heaves earlier in the day he has managed to keep everything in. He ate a little bit of scrambled egg and a couple bites of English muffin this morning.  He ate some ice cream at lunch time.  He gagged down ½ of an ensure this afternoon (after a LOT of horrible coaxing from me) and he ate a little tiny bit of chicken for dinner, a few bites of sticky rice, some mandarin oranges and two ice creams for dinner.  While that was not a lot of food, it was way more than yesterday AND it has made it through the upper part of the digestive track. I warned George that his bathroom trips or gas may increase and get worse before it gets better because there is a lot of air in his system.  He may experience pain at first but that is because all of his inside works are trying to figure out how to work together now. 

The doctor told him today that he is making good progress considering the amount of surgery that was done.  Part of the “outtake” issue is due to the fact that he has only 1/3 of his colon left and the colon is responsible for most of the liquid absorption in the intestinal tract.  It has to learn to work a little harder. 

He said that he won’t send George home until he is more stabilized with intake of food, nausea under control and bowels more in control and less frequent.  Underlying and unspoken was an actual return to home prediction. 

When we talked about the lack of nutrition he said he would send in the nutritionist/dietician to talk about ideas.  She wasn’t very helpful in coming to a solution for what types of food might be best for him.  The only suggestion she had since he likes sweet and cold is to go to Jamba Juice and get a smoothie and have them add whey protein to the drink.  I asked her if she knew if there was one close by and she had no idea because she “is not from around here”.  Seriously??  That’s the only thing you can offer and you have no idea where one is located close to the hospital??  That is beyond annoying to me and put me over the edge for today. 

The other changes that were made today was that the doctor finally changed the order of the milky ensure to ensure clear which George WILL drink.  And, with the addition of the PICC line he will get the central line in his neck removed tonight after nearly 10 days.  (They haven’t had anything connected to it since the middle of the night.) 

I feel like I should get reimbursed for doing so much of the care for George.  There are three people overseeing him on each shift (RN, CNA and charge nurse) and we hardly see them.  When they are in the room their phones are constantly ringing for them to care for another patient.  I asked the nurse how many patients are under her and she only mentioned three.  And those three are in different parts of the floor (would it not be easier to give them three consecutive rooms rather than one on each end of the hall and the third clear across the other side of the ward)? Most of the staff are very kind but are stretched beyond belief.  If I were not here George would probably sit on the commode for at least 20 or 30 minutes each time he went (rather than having at least a 20 minute break between trips).  If I were not here the motivation to order meals would be less and his GP bags would not be emptied often enough.  I have changed his bed, replaced his chux, changed his gown, helped him in and out of bed as needed (needs less help now but for a while was quite a bit).  Not sure how much we are charged for this but I think I need a discount here! 

As I helped George get cleaned up (yet again) I noticed his feet are severely swollen [edema].  Since we cannot lay him flat at all in order to properly elevate his feet we are hard pressed to get that to come down on its’ own.

This has been a LONG day of endless trips to the bathroom and so far the end is not in sight.  Considering I started writing today’s blog at about 5PM and it is not 8:30 [make that 9PM] [make that 9:30PM], that is how often I have been interrupted to tend to George in some capacity.

That being said – I will end here because I need to get ready for bed - - and we will see if there is any rest tonight.  [Yesterday he did finally stop for the night time hours – let’s hope he can repeat that part of it.]

P.S.   I would spell relief… S-L-E-E-P!

The “C” Word – Day 60 Exhaustive day for all

Our day started very early this morning.  The night shift came in for stats at, I don’t know, 4 or 4:30AM.  By the time she left George was starting to wake up.  At 5AM he asked to sit on the side of the bed for a few minutes.  He asked for me to wheel his tray over so he could munch on the rest of his Cheerios and have a cold drink.  He then moved to a chair where he managed to sit for the rest of the day.

He ate a little breakfast and I purchased some more juice and strawberry ensure for him.  We have given up on the kitchen to change the order as we asked two days ago.  By the time I left for work he was doing okay and it looked like the day might go better and he would get up and walk.

Apparently sometime after that he started having to make multiple potty runs.  And that’s how his day went, back and forth to the bathroom.  He was sent for a chest xray to make sure that there is no pneumonia (there is not) and he had a scan to check for blood clots (negative). 

He tried to eat a little lunch – but then he started vomiting this afternoon. Injection for nausea was give.

I spent the day on my feet taking care of clients, calls and whatever else comes up on a typical Wednesday “client day” at work.  Endless movement, nary a chance to breathe.  I ended that part of the day running errands before returning to the hospital – ice (for George) a proper ice chest (for George), gas (for the car) and dinner (for me). I did manage a quick shower at home as well (thank goodness!! It’s been a few days!!)

When I arrived at the hospital at 5PM George was still sitting in the chair but exhausted from the back and forth to the bathroom.  I guess they’d had to do a few clean ups during the day.

They are trying to do some more testing for oxygen levels in the arterial veins (which Rosemary says the doctor said it was a painful procedure).  That has not happened yet so not sure if it is an order or not.  I guess there was a quick mention of cdif (which I pray is not the case – George’s mother was hospitalized for this a year ago this week and she is still on antibiotics for it).  I guess this is a concern because there is no solidification taking place with him yet.

As I type this it is 8:30PM.  I have been up since 4AM – and will end this in hopes that I can get a little bit of rest tonight.  George has been calm for about an hour and a half.  That is a good sign that things may be slowing down. 

I send up a prayer for healing – no more backward steps, dear Lord.  We are wearing out right now and are praying for tender healing so we can go home where we belong. 

To help George calm down and relax I had him close his eyes and do a visual.  “Close your eyes and picture being in a cabin in the woods on a cold, winter day (George loves the cold).  There is a fire burning in the fireplace and a gentle snow starts falling outside.  The snow pics up, a wind starts causing the snow to flurry around.  But you don’t care what is going on outside.  For inside you are warm and safe, sitting by the fire with me.  We are enjoying cuddling on the couch with a cup of warm cocoa.  There is a blizzard outside, but that’s okay.  We are fine, we are enjoying the moment of watching the snow fall, the fire blaze and being safe with one another.”

That’s where we SHOULD be.  And, metaphorically speaking that is what we have right now.  We know that even though there is so much going on around us with this cancer, this pain, these problems we are facing with healing – we have to cling to the fact that no matter what, we are okay, we are safe in the loving arms of a loving God who is reaching down and holding us tightly in his palms, bringing us comfort during this turmoil. 

I ask for peace, for healing, dear Father above.  Restore George’s body from this cancer, restore my spirit with peaceful sleep.  Hold us in your tender loving care.  We are ready to move forward and to more work for You!   There is a bigger plan and a bigger purpose and we look forward to pursuing that. 

With that, I am turning out the lights so we might get some rest.