The “C” Word – Day 114 Two Months post-surgery

November 30^th – I suppose this is a milestone.  September 30^th will forever be a major milestone every year.  For now, each 30^th of the month that ticks by is a milestone marker determining any progress made. 

George asked me last night how I thought his progress is going.  I was not sure how to answer that.  After all, I have never been through this before so I do not have anything to gauge a proper response.  Sure, he is making progress - - but is he ahead or behind expected progress?  I don’t know if anyone can measure that.

I remarked that I thought it was going much slower than I had expected.  He agreed.  Did the abscess set him back?  Was it something else?  Is this normal progress?  In his mind his original return to work date was the first of the year.  The oncologist has determined it will, at best, be February 1^st.  At this point I would have to agree.  While George can walk nearly around the block, he has to sleep afterwards.  His stamina is pretty low – so staying alert for at least an 8 to 9 hour work day would be very taxing. 

His brain is not fully “functional” yet either. He forgets things easily sometimes.  Not sure if this is due to malnourishment, vitamin deficiency or what at this point.  The fact that he is just sitting all day long with the boob tube on probably doesn’t help.  I have tried to encourage him to by giving him couple of ideas to get his brain active but he does not appear to be motivated to do so.  Sometimes it feels like I have two Alzheimer’s patients in the house.  I was not prepared for George’s memory to be like this at this point in recovery. 

‘Tis the season to decorate the outside of the house.  I am either going to have to ask for help – or am going to have to figure out how to do it myself as George is not up to attempting to do it.  Perhaps I can get him to stay outside and supervise??  This has been his job to do (mine is to take care of the inside decorating).  These past few months I have had to learn how to carry a lot of the “load” for maintaining the house, the bills, etc. in addition to doing the things I normally do.  Some things have become less important and put off for the time being.  Trying to  remember to do the things I am not normally responsible for is sometimes hard! 

After speaking with George about where he is in the recovery process and what issues he is frustrated with, I encouraged some pro-active steps.  A special seat cushion would help.  I told him to look it up online.  I told him to find one and order it up.  He says, it looks like they have them at Walgreen’s or Target. I tell him that it is easier to order it up and have it in two days then have me run around to find out if the stores actually have one in stock!  It is not like I have a lot of spare time.  Today I have to keep an eye on Mom all day – and she is not feeling well so once she is up it will require extra effort to care for her.  The other thing he needs to do is track what he is eating, how much he is eating, and what effect those foods have on him.  This will not only help us determine nutrition and calorie intake (he is still losing a couple of pounds a week) but also enable us to figure out which things do not process properly given that he has a few less organs to help them.  If he can do that, then perhaps we can meet with the cancer nutritionist to come up with a plan to get him back on track and get the most bang for his buck.  As much as I have tried to help in this area I have been pretty much a failure – and George has come to resent my assistance in the nutrition arena. 

George is tired of the constant discomfort in his body yet he has spent minimal time trying to figure out other ways to change that. (This is not to say he hasn’t spent a lot of time thinking about them – he just has not been able to come up with an adequate solution.)  I am trying to give George some active responsibility for making changes by suggesting these two ideas.

So, where do we stand two months post-surgery?  If you measure it by where we were a month ago then he is doing much better.  He is having some success with taste (there are still many things that are still not quite right) and therefore is at least eating a little bit.  He is a moving a little bit more.  He is awake more of the day.  His wounds are all closed and healing well.  He does not have any edema.  He has less bouts of nausea.  He can speak in full sentences without coughing or losing his breath – in fact he can carry on full conversations for long periods of time.  Yes, progress has been made.  There is still much more to be made, but compared to where we were a month ago, this is definitely better. 

The “C” Word – Day 100 Reflections

Unbelievable that we have hit the triple digit day of our journey.  The days have sometimes flown by and yet other times have dragged on and on and on.  It seems that I have “lost” three months of my life to this disease.  Time that cannot be given back.  Time that I do not want to experience again. 

The need to blog was as much for me to “unload” as it was to keep people in the loop without having to repeat over and over what was going on with diagnosis, prognosis, treatment and recovery processes.

Some of the things that have been lost during this time are not replaceable.  Vacations long planned and anniversaries among them.  The feelings that went along with these were among the lowest I have felt – the anger of feeling cheated by this disease as it “took away” my vacation time. 

This disease has been all-consuming, playing on our every movement and every emotion.  Minutes ticked by, each one reminding us that we are like chess pieces with each move being carefully thought out and planned yet never knowing for sure if we would win the game.  So many risks with whatever choices needed to be made. 

The planning involved was much like an event planner.  Between scheduling doctor appointments, X-Rays, CT scans, lab tests and surgery dates, it was a busy time.  Beyond that was hospital time and recovery time.  We also had to take into consideration when to start and stop both Short Term Disability (SDI) provided by the state and the Short Term Disability provided by George’s employer.  Setbacks included additional time in the hospital after the initial surgery and a second nearly week long stay after complications set in.  After release from the hospital there are still doctor appointments and lab tests nearly ever 7-14 days.  Hopefully that cycle will stretch out as George moves into the next phase of recovery. 

Never in a million years were either one of us prepared for the emotional roller coaster that this disease has rendered on us.  We have been left feeling volatile and vulnerable at the same time. One minute on a high and the next in such despair.  We have felt as though we have had no control over our lives, especially when we were at the mercy of the hospital routines and procedures.  There were so many interruptions in our days and nights for “one more test”, “one more bag of something for the IV”, vital signs and such.  Lack of sleep led to exaggerated emotions, especially on those days when we heard we would be held “in prison” for one more day. Our lives in limbo as the days dragged on and on.

As a couple we were also stretched and strained.  In the beginning there was much silence as we each tried to deal with the cards we’d been handed.  The “c” word permeated the house as a dark cloud hovers before the rain.  George’s brain froze, seized by fear, left me to take control of nearly every move that needed to take place.  A forced learning curve took place as I navigated doctors’ offices and labs and radiology and all those things required to understand what was going to happen over the course of the next weeks and months.  I moved from wife to encourage to advocator to nurse with each phase of the process.  I stayed by his side day after day to make sure that he was taken care of, to help where needed, or just to hold his hand when that was all I could do. 

My strong “front” hid the true feelings going on inside not wanting to cause further upset or worry with George.  “I can handle it” was what I believed. What I found out was that I could not handle it as well as I thought I could.  Always one to view the positive, as time went on it became more and more difficult to maintain that focus. I felt badly for getting upset when George would not eat because, to me it was important for him to eat to maintain or get back his health.  I would become angry seeing George’s seeming indifference to whether we had “one more night” or not in the hospital when all I wanted to do was go home and curl up in my own bed and leave the nightmare behind.  I often wonder how others get through this when they have much longer treatments than we had to endure.  How does someone go through weeks or months of chemotherapy or radiation which leaves them unable to taste, eat, or even get up and move for months on end?  My own experience will be so short compared to theirs, yet it was torture for George and for me to endure weeks!

One of the things we discovered over the past 100 days is how much we needed others around us to bolster our spirits, to pray for us when we were down, to shout to the Lord for us when we were frustrated and to allow us to cry when the tears started to flow.  When we felt we had nothing more to give, they were there for us, quietly lifting us up in prayer to give us the strength to go that “one more day”.  Social media has enabled us to get immediate feedback for prayer requests and encouragement.  Each “like” and each comment saying “you can do this”, “we are here for you”, “praying for you and for George” meant the world to me.  We could not have done this without the hundreds of prayer warriors around the globe. 

The power of faith and prayer have been evident and clearly witnessed during this time of our lives.  Some prayers were answered almost immediately while others showed themselves in “God’s time” (and will continue to do so).  The answers to prayers have literally brought us to our knees and made us cry.  It is and extremely humbling experience.

We could not have done this without the support of our families.  The girls have spent extra time with George (even when he was unaware of it) and with me to encourage and help.  George’s sister and niece have had to step up and spend countless nights at our house in order to care for his mom.  His sister has had to step up in a moment’s notice when we ended up in the emergency room and then spend a few more unexpected nights during the latest setback.  Their help with Mom has enable me to concentrate solely on George’s needs and my own.  There is no way I could have taken care of both of them over the past few months. 

Here we stand, one hundred days after diagnosis, on the threshold of recovery.  Finally George is beginning to feel a bit more human though he is far from being where he was before surgery.  Physically he has lost over forty pounds (not including the thirty he intentionally lost at the beginning of the year) and is at his high school weight.  His clothes hang on him, reminding him of how he used to be.  His legs and arms are thin with little muscle tone after weeks of sitting in chairs or laying in beds.  I joke with him that I can no longer come to him to have him open that stubborn lid on a jar especially when it is me who needs to help him pull the tabs to open the orange juice container or get the milk carton open.  There are times he feels pathetically helpless – something he hates to feel because he has always had an “in control” demeanor. 

Every time he feels a twinge of pain he wonders if something else is going on.  His mind toys with his psyche.  Is this something to worry about?  (Given the fact he had no pain to tell him he had cancer nor let him know he had a bad abscess, he now tries to give credence to anything that might be a warning sign for trouble ahead or worries about things that are probably normal for his body to be experiencing right now.)  There is no guarantee that the cancer is gone for good so the “C” cloud will forever be hanging over our heads.  From here on out, he will worry when it is time for each lab test and each CT scan as those are what have detected the cancer and subsequent abscesses.  All we can hope for is that soon we will find what our new normal is and hold onto that for as long as is possible and try not to worry so much in between each test and scan that will be part of our future.

As a couple we are stronger having gone through (and still going through) a cancer diagnosis and horrific surgery.  One cannot take life for granted when you go through this disease.  For a period of time we did not know if we had a future.  Indeed, until the word came out from the surgery that pronounced “it’s a go” we had no idea if there was going to be a small window of time to live or a larger one.  In the waiting room there was a collective sigh of relief that surgery was proceeding.  The hardest part for George will be putting this behind him in order to effectively move forward with the art of living.  We need so much to find joy and spontaneity in our lives and part those dark clouds that have been hanging around.  We have to figure out how best to live our lives and enjoy whatever time we have as no one has a guarantee for tomorrow. 

Our futures now look somewhat different from what they looked like months ago.  When you stare death in the face, somehow the things most important in life are made vividly clear.  First and foremost are the “three F’s” – Faith, Family, Friends.  They are what makes life worth living and give us the strength to move on with our lives and live our lives in a way that makes God proud of us. 

While we do not know exactly what the future holds – or how much longer we have on this planet – we do know that we are fortunate to have “one more day” together.  Even though we are formulating a plan for what is next in our lives, we also know that we must listen for that “still, small voice” which may be God re-directing us in a way we did not know possible.  He is the ultimate conductor and has been guiding us and leading us all of our lives. 

I may not blog regularly anymore.  It is time to allow our lives to unfold.  I will post now and again when something comes up that seems relevant.  There may be days I need to reflect a bit more or unload a new frustrations.  For those who have been following me on this blog, I thank you for being there for me, for praying when you saw the need, for letting me know you have been “watching” our progress and for your encouragement.  It has meant a lot to me and has not gone unnoticed.  It humbles me to know you care about us.  Thank you!

Dawn

The “C” Word – Day 96 Turning a corner

After all of the ups and downs of the past weeks and even months, it appears that things have finally turned the corner!

Since the return of taste buds, George is experimenting with the taste of foods and re-introducing them little by little.  On the way home from the hospital we stopped at Carl’s Junior for a Western Bacon Cheeseburger (ah, bacon – the first food he tasted).  Since then we have had burgers, Chinese food, Mexican food and even fried prawns.  Not every taste or texture is back yet but things are slowly improving.

One of my desires and hopes was that George would be well enough to take me out for my birthday.  (Honestly, the first one was for being home on our anniversary – and that did not work out.)  We did go out even though it took a lot of effort for him to do so.  This was the first time we have been out to eat in over six weeks (and is actually also the first time we have gone to a non-medical place in that amount of time as well).  So it was a banner day!!

George is still very weak.  He has lost so much weight over the past six weeks that his shirts all hang very loosely on him.  Once things settle down and he has some energy we will need to make a shopping trip to find clothes that fit him better. 

However, things are doing better than they were a week ago.  The extreme shortness of breath is gone.  The appetite is slowly returning.  The smiles are more frequent.  Slowly things are getting better though it will be quite a while before things reach our “new normal”.  It has been six long, twisty weeks since surgery.  We feel like we have been to heck and back and forth and are so grateful that we seem to be on the downhill side of the battle.  We pray that this continues to be the case.  

The “C” Word – Day 93 Another Roller Coaster Day

One thing we know for sure is that cancer and surgery puts one on one rickety roller coaster ride.  Each moment brings its joys or tears, sometimes happening in such quick cycles that you do not know which end is up and which one is down.

Today was one of those up and down days.  We sent out prayers for a “Sunday miracle” that we would be able to go home today.  The drains appeared to nearly stop for awhile this morning and our hopes raised some that the tubes could come out. 

This morning, one of the “stand in” doctors came in and virtually told us that he did not expect us to go home for a few more days because there is still drainage and some of the blood counts are not really back in balance.  I totally spiraled down with that news.  A few more days??  Not now, please!!

George and I spent some emotional time in the room together.  Tears flowed, words choked out.  Why is this all happening??  Why can’t we catch a break!? 

Fortunately for us, a few good friends stopped in for a visit today.  It gave us a diversion from our heart broken souls.  George broke down as he talked to these friends and tried to describe all that he is feeling right now.  They all offered their own words of strength and comfort and some of the even knew exactly what he was feeling.  For a bit of time we also were able to talk about things outside of our own little hospital world and feel a little more normal. 

I had also decided that I need to get out of this room for a while and made the decision to go home to sleep tonight.  While George likes me here for the morale, he understands my need to have some time to myself.  I also reached out to see if friends might be able to sit with him part of the days he would be in the hospital so that I could go to work yet know he had someone to sit and visit with him.

Then… our Sunday miracle came into view.  The surgeon came in – and he is not on call this weekend.  He came in to check the charts and see how things were going - - for us.  After some discussion, poking and prodding he gave two choices.  George could go home today and then come back tomorrow to get the drains removed.  Or spend the night and he would come in tomorrow morning and remove the drains and send us home.  George opted to not have the back and forth and said he could come back in the morning and start processing us out the door to be gone around noon.  YES!!  An exit strategy. 

This roller coaster has taken us up and down and up and down again.  Sometimes repeatedly over the course of days.  Sometimes, like today, it did that repeatedly in the matter of hours.  Although I don’t feel like I have ever gone through these highs and lows like this, I have forgotten that there was a time nearly 15 years ago that I did just that.  We take so much of life for granted.  Then life throws us a curveball and we act and react to the circumstances in whatever manner works for us.  As time goes on we forget about it until the “next time”.  This has been, by far, one of the most difficult times I have ever had to go through.  Logic and emotion do battle with such vengeance at times I feel like I am being ripped apart and pulled in so many directions at the same time that I do not know what the “right thing” is sometimes. 

Then, I realize we have to step aside and look at the reality.  The reality is that George IS better.  He is better than he was a month ago at this time.  He is better than he was just five days ago.  He has his taste buds back.  He is slowly getting an appetite.  He can walk without being breathless.  He can talk without coughing.  He is responding to the antibiotics for these abscesses.  And things will still progressively get better from here on out.  We believe or are hopeful that this was the last hurdle for this particular surgery.  We hope this was the last very deep valley we have had to go through at least for a while. 

The surgeon and George talked about the emotions for a bit today.  The surgeon said that he would be worried for those patients who express no emotion when given a diagnosis of cancer.  He says that the ones who allow themselves to express emotions and shed tears are the ones he knows will get through it.  He cannot imagine what the emotions are for someone like George who had a huge surgery.  But, those emotions are expected and are part of the reality of the diagnosis.  He sat and chatted for some time.  He has been a blessing to us through all of this…. And when he gave us news that we will get our “walking papers” tomorrow we rejoiced…. Somewhat cautiously, but we sent up a silent, “Thank you, God!” today! 

The “C” Word – Day 92 Never Ending Changes

Finally, last night we were pretty much ignored (though we did make a comment to the nurse about possibly not interrupting sleep so often).  Part of this was the fact that the drains had slowed and the vitals had stabilized so the need to come in so often was not needed.  Aside from the 12:30 vitals and 4:15 labs, we were left alone.  They had given George his Ambien last night so he slept quite well. 

The morning was a little busy with all of the “stand by” doctors coming in as our regular doctors are off this weekend.  The biggest downer of the day was our surgical stand-in doctor.  Although our regular one had said that once they figured out an antibiotic and started it that we could have the tubes removed and let the meds to their job.  This one said that as long as things were draining the drains would stay in (even though one is running very clear fluids right now which means the infection has cleared up).  How long that will take is anyone’s guess.  Clearly that put us in a down mood for the rest of the day.  We know that things have to be done right but just when we saw light around the corner, poof, it disappeared! Frustrating feelings again.

George was still enjoying his taste buds today.  Keith brought Oreo cookies last night and George had them for an afternoon snack – and LOVED them. 

The other hard thing today was the fact that George’s potassium levels dropped again so they started an IV of four bags of potassium.  The solution burned in his veins so he spent the day with an ice pack on them – and also had to have them slow down the flow so it is taking at least twice as long as it should so he has had an IV drip for most of the day.  Once the bags are done they will wait a few hours and re-test to see if it is holding and then he will start oral potassium – only this time the nurse on duty knew about the capsules so he won’t get his mouth all bent out of shape.  The IV potassium is changing his taste buds though so that is definitely taking things in the wrong direction for eating purposes.  Praying that it does not go all the way back to no taste again. 

This evening we were moved from our ward to the one where we spent nearly two weeks.  The “sixth floor” was down to five patients so when that happens they combine with the other surgical ward – the C3 unit.  Down here we have to ask for snacks, ice, etc. whereas the floor we were on we had free access to everything.  That means more waiting around when we need something!!

We are praying for a Sunday miracle to happen… to have our surgeon’s “word” be the exit strategy and not all the stand in ones.  We want another ‘great escape’ so that we can get home again.  Lord, if it is your will, we believe our patience to have been tested to great lengths these past few months and really need to try to find our new normal at home.  Please heal George from this abscess totally and completely.  Please allow the drains to stop flowing and for the antibiotic solution to be found quickly in order to allow passage back to home. 

The “C” Word – Day 91 Hallelujah Day!

First, let me tell you about the longest night.  We were so tired yesterday so decided that perhaps we could get George to turn in a little early so he could get a few hours uninterrupted sleep.  At 8:30 we had his bedtime meds administered and he climbed into bed.  I pulled my bed out and my computer to get a few things done.  I could hear that George had fallen asleep.

At 9:20 the CNA came in and drained the abscess fluid.  No sooner had she gone from the room and the nurse came in to flush the drain lines.  At 10:30 the pulmonary specialist showed up for the 5 minute nebulizer treatment.  At 12:10 the new nurse on duty came in for vital signs.  At 1:30 the CNA came in to empty the drain and 2:30 the nurse to flush the lines.  More vital signs at 3:30 AM and at 4:20 he phlebotomist showed up for lab work!  At 5:40 the nurse came in to drain the abscess bag and while she was finishing up the surgeon showed up.  Of course when each of those people came in the room the lights had to be turned on!  Each time I cursed under my breath, “seriously?  How is anyone supposed to rest!?!?”

The surgeon reported that he had not seen test results yet from the abscess drains.  They have to make cultures so they know what antibiotic will kill it.  He said that the abscess was quite massive and he was surprised that George was not running a continual fever and in a lot of pain.  (Again, no symptoms!)  He made a comment that the plan was to get us home “this weekend”.  Ugh!

The pulmonary specialist came in and described what had to be done with the culture and testing, etc.  He explained that it could take up to 24 hours to figure out what the infection was and another 24 hours before they determined what would work best for it.  That puts our stay up through possibly Saturday.  He explained that the pulmonary function test he ordered up could wait until next week to give the belly a chance to heal so they could get a good test.  He did not feel that a plasma exchange would be necessary based on the fact that the high blood levels were in direct correlation to the abscess.

George felt comfortable with all of the news and was no longer feeling reluctant about staying.

We ordered up some breakfast – bacon and rice krispies.  George took a bite of the bacon and started crying… tears of joy and praise.  The bacon tasted like bacon!  Hallelujah!  Taste buds are returning.  The day went quickly uphill from there!  While his breathing is not quite normal yet, it is returning.  He was able to speak today without being labored, without coughing.  And we had several visitors who spent a great deal of time talking with him.  And he did it all with a smile, with energy, with wit and without great effort on the lungs.  He ate three small meals today which had more calories than he has had on a daily basis in quite some time.

So we have a plan.  Once they determine what antibiotic will work, put in some sort of oral form and start taking it.  They should then be able to remove he drains and let the antibiotic do its’ thing.  And then we should be able to go home.  The time is unknown, but there is a plan.  It was a great day today!  Hallelujah!!

The “C” Word – Day 90 Highs and Lows

The past 48 hours has been a time of highs and lows for us.  The Ambien gave George restful sleep without “hangover” side effects. The steroids gave him more energy and a willingness to try to eat.

And then the world crashed down again.

The oncologist on-call doctor saw George’s test results from Tuesday and was very concerned about extremely elevated WBC and platelet counts.  He suggested that we go to the ER and have further testing done to determine if there was clotting or infection going on.  So, after work I packed up George and away we went.

After a chest x-ray determined that there was some fluid on the lungs but not enough to cause such shortness of breath a CT scan was ordered.  This showed no clotting but the lower abdominal area showed several areas of possible abscess.  He needed to be admitted for the night and they would determine if surgery would be required or drainage. 

My “boss”/co-worker brought over some food for me and she spent some time with us saying prayers for George and giving him a great pep talk.  When she left he was feeling a little better.

It was a late night as we kept waiting for the surgeon to come in to finish admission but he never did so the lights went out as 12:15AM after shift change.  The surgeon showed up and let us know what the procedure was and that he had put the request in during the night so hopefully it would happen earlier in the day.  George was in great spirits still this morning and joked with the doctor and some of the staff. 

Then the pulmonary specialist came in and stripped him of that joy by telling him about the processes for the lungs.  He said they did not want to do a thoracentesis as they felt they should first try non-evasive procedures.  They gave him Lasix via IV (he was getting pill form at home) and then ordered up something called IPV treatments.  This is a short treatment (about 5 minutes) that will be done very eight hours and is meant to push air into the lungs with some pulsation in an effort to open up the lung cavity and push the fluids down.  He also order up George’s favorite spirometer to use throughout the day.  He also ordered up some sort of test for the lungs and an echo-cardiogram to check on how the heart is pumping.  All of this left George very down and out because we know how long it takes for stuff to happen around here.

True to form, the special test that needs to be done – well the person who does those came in and said it would be “this afternoon or tomorrow morning”.  What???  She says they needed to work around the schedule for the IR (drain) procedure and that it would be best to do the test after the IR as the abscessed areas might be putting pressure on the lungs as well.

The IR was finally done about 1PM and while he was down getting that done the gal for the echo-cardiogram showed up and I told her was not here right now.  She said she would come back (she never did).  Then they guy shows up with the breathing treatment.  He said he would come back and he did, twice…. Finally catching George at about 4PM.  The IR drainage took two hours!  Apparently they pulled a lot of fluid from two specific areas that were badly infected.  He came back to the room with two icky looking drain ports that will be left in overnight.

By the time George was able to order up real food he was no longer hungry so ate only a small bit.  He was so depressed from the days’ activities and just felt like things were not moving forward as they should.  I tried to boost him up and tell him that we had made some progress but he was not convinced.  He was also hurting from the procedure performed this afternoon.  On top of all that we are not at all sure that going home tomorrow is a possibility.  We have a sneaking suspicion that things will drag out and that he will need either more heavy duty antibiotics or further stuff on his lungs. 

This evening had a bout of nausea and I decided he should try to get a few hours sleep between 8/8:30 and 11-12 when they will be in for another lung treatment and vitals after the change of shift.  Then, hopefully he will get some uninterrupted time until at least 5AM.  (me, too!)

I was pretty tired today too and we both spent time trying to close our eyes and just get some rest or a cat nap in during the morning hours.  I plan on turning in shortly to get some much needed rest myself.  I was able to run home and take a shower this evening so at least I feel clean.

As stated in my earlier blog, it turns out I will not get away this weekend to see the grandkids…. I am glad I said nothing to George because he would have felt really bad about spoiling yet another planned time away.  I actually did not get my hopes up too high… so I am not as disappointed as I once would have been.  Sad to say that this is just the way it has to be for now.  No long-term plans until George is in the clear. 

I am planning on the massage tomorrow, wherever George may be.  If he is still here it is easy enough because it is just across the parking lot.  If we are home, I will just drive back here.  Either way, my back and shoulders are sorely in need of attention.  The bed in this room is not as good as the last one.  It appears to be broken so I cannot pull it out all the way so have to stay curled up most of the time.  Even if I could pull it out, if I did there would not be enough room for the nurses to get to their desk when they need to or to change out the IV stuff, etc.  I will REALLY appreciate the massage tomorrow!

The “C” Word – Day 88 2nd Oncology follow up

Today we saw Dr. Sheh again with CBC lab work prior to going upstairs for the appointment.  Three points to cover today include appetite, breathing and sleep issues.

Upon weigh in I note that George has lost 8 pounds since Friday.  He keeps attributing it to the Lasix which causes water loss, however 20 pounds lost in two weeks is more than just water at this point.  The doctor is a little concerned about the excessive weight loss. 

We talk to the doctor about the issues bothering George right now.  We take a look at the x-ray and, indeed, it shows some fluid around the lower portion of the right lung.  A thoracentesis will need to be done.

George describes the problem with his appetite (or lack thereof) and how the meds prescribed last week did not really help so we stopped taking them as of yesterday.  Between that, the weight loss and lack of energy, he prescribes a steroid to try out.

We talk about the problem sleeping and that we are trying a low dose (half a pill) of the Ativan that had been prescribed.  Because this drug is habit forming, the doctor prescribes Ambien in place of that. 

The lab results show high white blood cell count and George reminds him that he does not have a spleen anymore.  We realize that we will have to remind every doctor about this from now on because, even though they sort of remember the problem they forget!  The blood tests also show an extremely high platelet count so he has us re-do the labs before going home. 

All points covered that we need to address.  On the way out we start the process for the thoracentesis but it looks like it will not take place until at least Thursday because it requires authorization from our insurance and additional lab work and write up from the doctor office.  The additional lab work is added to the one we need to re-take on the way out. 

The doctor phoned George this afternoon and said that the repeated lab work still came out with high platelet counts. He says that this is sometimes indicative of a blood clot trying to form.  Normally he would say to take an aspirin or a half an aspirin every day but because we need to have the thoracentesis done we cannot do that just yet.  He says he will explore the issue further and call back. 

So we go to bed tonight with half of the problems being addressed via medication over the next twelve hours – but the worst one, the breathing, has to wait a bit longer.  At least the solution is on the horizon and we can hopefully see it coming. 

On hold is the fact that George’s sister has offered to spend a night at the house watching Grandma and George so that I can get away and go visit the grandkids in Roseville.  I haven’t mentioned it to George yet – nor have I committed to it just yet.  I have only told my daughter that it is a possibility.  I don’t know what the end of the week holds yet so I hesitate to commit.  I am afraid of being disappointed that the plans won’t go through because that has been the case for the past few months and the let-downs are hard to deal with.  Life in limbo – life on hold.  That has been the trend since August and it can become quite weary after a while.  While I keep telling George he had better improve enough to take me to dinner on my birthday, I am holding my breath because there is still the possibility that won’t happen.  I still hope – I still hope that the thoracentesis will take place and he will find relief to breathe again – and I still hope that the new meds start working and that he also wakes up one morning to find that his sense of taste comes back. 

Several other things on my mind this week as well.  Today would have been Mike’s 57^th birthday.  On Thursday my sister is having open heart surgery.  All reminders that life is precious and each moment is precious.  Somehow I need to focus on the positive things … that is sometimes hard to do when the tough stuff is staring into my face.  The tears come all too easily these days.

Why the tears?  I try to evaluate that.  I thought about that the other night while lying in bed.  I wonder why I cry when someone offers help…. Why I cry when I reach out for help (the cancer care organization) . . . why I cry for no apparent reason sometimes . . . I attribute some of that to the belief system I was raised in (Christian Science) and am reminded of the time when I had to have surgery when I was 30 and the emotions I went through at that time.  What it boiled down to was the fact I was raised to believe I was the perfect creation of God and there was nothing wrong with me . . . yet by having surgery and taking medicine I had somehow failed . . I was not ‘perfect’ – I was human, I was vulnerable.  In my parents eyes (and therefore reflected on to me) I had succumbed to those very things that I had been raised to stay away from. That was a tough time in my life, to know that I could not turn to my mother when I needed her the most.  I did not tell her about my surgery until days after I had been home.  I knew she would be disappointed in me.  Perhaps there are still some residual, subliminal feelings still there.  To admit that I need help is still hard for me.  Harder than I realize.  It shouldn’t be… but those lessons I learned are really hard to break away from.  

The “C” Word – Day 86 What will the week bring?

Five weeks post-surgery now.  Still clearly not out of the woods.  George is still having trouble with his breathing which makes everything else he needs to do difficult at best.

Tomorrow I will take him for a chest x-ray.  Although I am not sure why as this will only tell if he has pneumonia I think.  In the hospital we had the x-ray to rule out fluid in the lungs and then he had to have a CT scan to verify he had fluid around the lungs… I sure hope we don’t have to do both of those this week!  I do believe we will need another thoracentesis procedure (the same thing we had done the day we finally left the hospital).  It is an outpatient procedure.  He would feel some immediate relief in the lungs but then feels where they push the needle through his back.  If we have to do this again I hope we can get it done soon and then hope that it does not continue because this is agonizing for both of us.  I think if we could fix this once and for all we would see much greater progress for George.

This was a relatively quiet weekend (well, the house has been quiet for weeks now).  George was feeling a bit depressed yesterday, having a woe-is-me kind of day.  I told him that was perfectly fine because I certainly have had my share of them.  He says that even though to us it does not look like he is trying to make forward movement that he is trying – but mentally or physically he is just not able to do much.  He also knows how much of my time this whole ordeal is taking and how much I have given up in order to help him make it through this far.  He feels badly that I have to change the dressings on the newest wounds and help him do basic daily living skills sometimes.  We sat together last night and as I massaged his hands (which are a LOT smaller than they used to be) I couldn’t help but note how fragile and frail he is right now.  It is quite scary.

Steph came by for a visit yesterday.  It was a tearful reunion for him because when he went in for surgery he did not know if he would come out.  He does not remember her being in the ICU unit several days after surgery so this is the first time he has actually seen her.  He had asked her to give him a mani-pedi as he sorely needed his nails clipped.  She readily agreed and did this while I ran out to do some shopping. 

We talk (a lot) about getting calories in.  While the doctor suggested he eat five to six times a day (and try to eat some protein bars which give a lot of bang for the buck), George is having problems with this idea.  Doctor said to eat something every two hours.  Of course, there is push back in regards to this.  After one day he already claims he is tired of the bars (he had only one on Friday and a half on Saturday).  I told him that we are running out of options for getting nutrition into him and if we can’t somehow get his stomach to accept a little more food that our next option is an IV… and I REALLY do not want to go there.   That was one of the things we discussed on Friday – that nutrition or lack thereof is a vicious cycle.  He needs food to get energy but he is lacking the energy to eat.  It takes a conscious effort to break that cycle.  He did pretty well today as every two hours I reminded him he had to eat something.  He did not take in a lot of calories today but he did eat a little something.  He discovered that he can actually taste regular Lays potato chips and enjoyed eating them.  If only his sense of taste would come back he might find trying to eat more satisfying. 

I do not know what he will do while I am at work this week.  I will write reminders as I have been doing – but whether or not he actually reads AND follows them is out of my control.  While I know I have to “let it go” it is difficult for me.  I want so badly for him to gain some control of life.

While this week I know that I have at LEAST two places to take him (x-ray and oncology), I also have some things for me to do.  I will attend my first caregiver support group on Wednesday evening and get a nice one hour massage on Friday afternoon.  Of course, all of this is provided there are no other hiccups in the agenda – and as I said, there will probably be at least one other and that would be the thoracentesis. 

I also plan on getting back to my exercise activities starting with my 6AM half hour “sunrise pilates” classes twice this week and hopefully will try to get back to the gym one morning either this week or next.  The toll on me physically is beginning to show as I haven’t been able to get any activity in myself – and my eating habits have been horrible since I spend so much time appeasing George by driving around to various fast food places as he tries to find things that he would like to try to eat. 

So this is guaranteed to be quite a full week between work, appointments for George and activities for me.