The C Word – A New Battle Day 37 - The Lull before…..

As things have begun to settle down and as the “jewelry” start coming off, it is easy to sink into an ordinary routine and not think about the journey ahead. 

George’s external physical issues are beginning to fade.  The wound on the stitch line is very nearly gone, most of the scabbing has already come off.  With the PICC line and drains gone, so too are the signs that anything was there.  With only the Jejunal tube in place, even the use of that is slowing down.  Tonight we have one last dose of Vancomycin to administer there.  After this, the only reason for the tube is night time feedings.  With Dr. Bastidas’ approval we cut back from 750mL to 500mL and will see if George is able to maintain his weight over the next few days.  The cutback in “food” intake also means that the feedings are complete between 2:00AM and 2:30AM.  At that point I can remove the tube, flush it, and George is free to get up whenever he needs to without calling out to me (that time of night also happens to be about the time one or both of us wakes up to use the bathroom so is not an “extra” waking period).  This also means that I can adjourn to the bedroom upstairs and complete my sleeping in our bed. 

With the last dose of meds being administered before going to bed tonight, this means that I get to sleep in tomorrow morning.  No need to get up to administer anything.  Of course, knowing me, I likely will wake up at my usual time!  Go figure!!

No more daytime meds means that we can be out and about during the day without worrying about needing to get home at certain times.  It also means that I can put in additional hours at work without needing to run home in the middle of the day.  It means that George will need to get himself up to get his own mid-morning snack and his make something for lunch.  All things he is capable of doing but for which he normally relies on me to get for him.  However, it is one more step to him being self-sufficient. 

For the coming weeks we will fall into our “new normal” routine with me working out of the home partial days (less than I was before the surgery).  We will have at least one more appointment with Dr. Bastidas when it is time to take out the feeding tube.  Then we should be done with him for the time being.

As George heals and starts to get stronger, it is easy to forget about the next battle which is forthcoming.  On the outside he looks good, he is feeling somewhat better and can measure his progress in his own way. He is leaps and bounds ahead of where he was 5 weeks post-op from the last surgery.  I remember how hard that was and the obstacles we faced – and can say that this time, though with difficult moments, was so much easier than the last time.  I think we both learned lessons on the journey and have been more realistic about what to expect and have been more patient and more tolerable than the first time around.

It is hard to believe that inside there is still cancer growth.  It is also hard to believe that there may not be any really good, viable treatment for it.

We do have an appointment set up with Dr. Sheh on September 12^th.  At that time he will tell us what he has found as far as viable treatment options.  We can then take what he says and do our own research, talk to others who have had similar circumstances, weight the pros and cons and determine what is best for George.  We will be attending a PMP conference in the Monterey area in October and will have the opportunity to talk to others in person and perhaps gain some insight into treatment options.

In the meantime, there will be no exciting news to report.  Life will be moving along at its’ slow pace, both of us still recuperating from an exhausting 6 weeks.  I am amazed at the toll it has taken on me (as I find myself needing AND taking a nap almost every afternoon).  I look forward to the day that the feeding tube can stop and we both can get up whenever we need or want to – and for the day George feels well enough to sleep in bed again.  I don’t think it will be too long now. 

An update on Mom:  Since her hospitalization last Saturday morning she has had bacterial pneumonia and a bladder infection – but with treatment is ready to move to a rehab facility where she can be evaluated and receive some physical therapy.  A decision will be made in mid-September about what type of care she will need moving forward and whether or not she can move back to her apartment in memory care.  The prognosis is that she has six months to three years to live in her condition – though likely will be on the shorter rather than the longer side of things. 

For now, I will stop journaling and pick up again on September 12^th after we’ve met with Dr. Sheh.  Time to spend doing a few other things, catching up on things at home, maybe do some organizing as I hope my energy level starts to pick up once I get some good sleep!  Looking forward to not having any super nursing to do for the time being, that is for sure. 

We are so grateful for all the prayers, for the visits from friends, for the text messages, for the cards and good thoughts we have been receiving these past few weeks.  We hope to get out and about a little bit more now (in short spurts anyway).  For now, in this moment, things are good… and we will appreciate this time that we have.

The C Word – A New Battle Day 35 - More Milestones

This morning when George awoke he was complaining about the area under the PICC line bandage itching.  It was worse than yesterday.  Before leaving for work I sent a text message to Dr. B asking if we might be able to stop by the office later in the day to get it removed and told him that George was having an allergic reaction to the tape on the covering.  He immediately called and said that I could do it as it would take just a few seconds.  Keeping him on the line, I told George that I would be doing it.  I thought George’s eyes would pop out of his head (he doesn’t trust me to always to things right).  With Dr. B on the line I peeled back the corners of the bandage and slowly pulled the PICC line out and put a small bandage over the opening.  Voila!  All done! 

With the PICC line out the next goal was a full on shower for the first time since July 19^th.  That happened this evening and, according to George, it felt really good.  We opted for the shower over our routine evening walk as any extraneous activity zaps George of his energy.

With that, we have just the feeding tube to take care of now.  Hoping that George feels comfortable enough to back the feedings down soon.  He has actually put on 1 ½ pounds the past 2 days so if that trend continues we really need to cut back another 250mL.  I think that will be the last cutback if he can maintain.  I can find the final 500 calories in a good bowl of ice cream!!

                            

The C Word – A New Battle Day 34 - More changes and a milestone

Today was George’s “milestone” day…. He made it all the way around the block for our evening stroll!  Last time around it took much longer for him to get to the point he could go all the way around the block!  Hoo-rah! 

The other activity this week was to be scheduled for a CT exam.  However, he had a chat with Dr. M on Monday and they both discussed the fact they no longer felt the need for a CT scan to be done.  This is based on the fact that George is feeling better, the fluid in his drain had stopped, and he is tolerating eating foods okay.  This means that the PICC line should be able to be pulled but we did not receive a return call from his office today.  I will call on that tomorrow and see about getting in to the office on Thursday to have that removed.  That will mean “2 down, 1 to go”.

We have reduced the amount of tube feeding from 1000mL to 750mL overnight.  We are monitoring his weight for the rest of this week and if he maintains his weight we will take it down another notch and see what happens.  Hoping that by the end of the month we can take the feeding tube out. 

So, things are progressing in the right direction with the healing process.  We are thankful for that.

We contacted the oncologist to see when we should be following up with him about the next step.  He suggested we schedule an appointment in 2-3 weeks to talk about chemotherapy.  We will surely have our questions at that point about the success rate, the side effects, pros and cons, etc. Then we will have to make a decision about what is best for George.  I imagine if we do move forward with chemotherapy that we would wait a bit longer for George to be more healed from this surgery.

On the point where George’s mom is concerned, she is being moved to a skilled nursing facility tomorrow.  They located a company that can move her via gurney as she is not able to get out of bed on her own.  We are not sure what the expectation is for her to improve (or not) in the coming weeks and have to determine what to do about her living situation.  Will likely need to give up her apartment unless they can handle all the changes that have occurred recently (and that is only if she has some physical improvement).  Still a tenuous situation at best. 

I enjoyed a wonderful 90 minute massage yesterday.  So much deserved and so much needed!  Erica really worked over my back, shoulders and neck which were full of knots after sleeping in convertible beds (at the hospital) and the couch!  And, I slept really good last night!!  Trying to “take care of the caregiver” as best that I can.  I take a nap or rest at least every other day in the afternoon.  When the eyes start to droop I just put away whatever I am doing and head up to the bedroom for some extra rest.  (I enjoy being able to stretch out in bed versus curl up on the couch!) 

All in all a pretty good couple of days!

The C Word – A New Battle Day 32 - Even on Sunday!

This weekend has had some new trials.  George’s mom has had some health issues.  On Friday she went by ambulance to the hospital because she was complaining of hip pain.  After much testing they sent her home around 10PM.  An hour after dropping her back at her facility, Rosemary got a phone call that she needed to bring her back to the hospital right away.  They had further tests that came in after she left that revealed she may have a pulmonary embolism.  They arrived back in the ER after midnight and after much testing determined she is having heart failure and some weakening in some of her valves.  She is now bedridden per the doctor.  So now things will be moving in an entirely different direction.

At first George did not want to go visit her.  After three weeks in a hospital, he did not want to go “back there”.  I told him I would go see her without him – but after sleeping on it he decided to go. Just before we left we received a call from Rosemary and she forewarned us of what we might see.  She said that Mom was very pale, not making much sense if you could get her to talk, sleepy, etc. and said she is not in a good state right now.  We arrived to find Mom sitting up in bed, all cheery and perky and had the same conversation we always have with her.  It was as though nothing had happened.  Go figure!!

In the afternoon we were sitting watching TV and the phone rang.  It was Dr. B phoning to see how his patient was doing.  After chatting with George he asked how the drain is doing.  He then said, “I’m in the office today if you want to come over.  I’ll take out the drain.”  He didn’t have to say that twice!  We hightailed it over there and he removed the pigtail drain.  ONE LESS THING to worry about.  (And the pigtail and bag were the hardest to “disguise” when we would leave the house - - so now there are no visible tubes protruding!) 

We talked about nutrition and other things.  We will do half the amount of feeding tube overnight and see if that affects George’s appetite (hopefully increases it) or not.  I need to bring the scale down and have him weigh himself so we can determine if he is eating enough to maintain his weight. 

He said he would override Dr. M and remove the PICC line if we wanted.  We decided to wait until after the CT scan and results.  For starters, this offers them a line to use for the CT scan because they always have a hard time finding a vein to use.  The results will also show Dr. M if the pockets of fluid are gone or have reduced in size and that is what he wants to look for in order to determine if the antibiotic regime is working. 

As we play with the amount of nutrition in the feed tube and monitor how George is handling more food, we will then be able to figure out when the tube gets removed.  We have to at least go to the end of this week because of the rest of the antibiotic he needs to take via the tube. 

So, our Sunday visit means we do not need to go to his office on Tuesday afternoon!  Glad for that as it frees me up to do something else that afternoon.  Grateful to have a surgeon who calls us whenever he feels like it to check in on George.  And one we can contact whenever the need arises as well. 

After we got back from our appointment we still had time for a nice visit with friends Cathy and John as well as a facetime call to Bella Boo and a chat with Stephanie.  Quite a productive Sunday!

The C Word – A New Battle Day 30 - One Month!!??**

Wow, it’s been 30 days since surgery.  Sometimes it feels like it was a lifetime ago.  Sometimes it feels as though it was just last week.  Time just passes by without us noticing it.

Today we went to lunch with some of George’s co-workers.  It was a good chance for him to catch up with people he hasn’t seen in quite some time.  It was a safe way to introduce George back into the world of eating out.  We went to Olive Garden and their soup/salad/breadstick combination is a good choice for both of us to eat.  We were there for nearly an hour and a half and he did really well.

This evening we did a longer walk than usual.  I reminded George last night that 30 days out from his first surgery he could not even walk half that distance.  I know things are different this time around – the last time he was heavily affected by multiple abscesses and fluid around the lungs.  That makes a huge difference.  But… progress is progress!

We found out from the pharmacist today that Dr. M has requested that the PICC line stay in for two more weeks.  I think I know the reason for this.  Tonight is our last dosage of the IV antibiotic meds (Merren).  This med was to treat one of the two infections that they diagnosed in the hospital.  Dr. M really preferred that we did not have to use two antibiotics as the Vancomycin works best by itself.  For the next week or so we will take only the Vancomycin.  I imagine more labs will be drawn over the next two weeks in order for him to see if this entire treatment series has been effective.  If it is, then the PICC line can come out.  If it is not and we have to re-introduce the Merren, then the PICC line is available. (The Merren is only available in IV form.)  So Dr. M is playing this safe.

We still haven’t heard about a CT being scheduled.  I just hope things do not happen last minute as I have scheduled things all day on Monday (work and a massage), and I have scheduled meetings on Tuesday morning.  We see Dr. B on Tuesday afternoon and, if we have not yet heard about a CT scan, he will fast track that and would most likely have that towards the end of next week. 

This week there have been several issues with George’s mom.  His sister has been dealing with all of that.  On Tuesday she had a seizure.  After a trip to the ER and lots of tests, they determined she did not have a stroke or an aneurysm.  She was acting “herself” soon after.  They did recommend she be started on anti-seizure medication.  Today as we got home we got another call from Rosemary saying that as she arrived at the facility there was an ambulance and fire engine and that they were there for mom.  Apparently the staff had difficulty getting her out of her chair and she was complaining that her back or hip hurt.  They called the nurse who told them to call an ambulance.  Rosemary was a bit peeved as this was not an emergency call.  After some back and forth between the emergency personnel, the staff and Rosemary they determined that Rosemary would try to take her to the ER.  However, it proved difficult for mom to bend her knees so the ambulance did do the transport.  We just spoke with Rosemary and all the labs are good (again), they see no reason for what was causing the issue (again).  They were awaiting the last test (an ultrasound I believe).  It is looking as though two ER trips are finding absolutely no justifiable cause for whatever is going on with mom this week.  Frustrating and puzzling. 

As we close out this first month of our new battle, we are grateful for the physical progress that has happened thus far.  There is still a road ahead… and we have not even begun to really process and deal with the underlying issues of the cancer.  This first part of the journey, the surgery recovery, has proven to be exhausting on many levels.  I look forward to being able to ease up a bit as medications start to go away for the time being. I think it will be good to catch my breath and try to be able to re-focus on other things for a bit of time.  Catching up on my sleep will definitely aid that process. 

30 days – 4 weeks – 1 month… behind us. 

The C Word – A New Battle Day 29 - Catching up

Today we were able to spend time with three different friends.

One, Rob, is a miracle man along with George.  He has had several major surgeries over the past few years as well and, as we joke, is upright and doing okay.  He pointed out that one year ago he (Rob) had just undergone major surgery on his brain.  Today, he helps to run the business that he and his wife own.  These two guys enjoy spending time together.  They give each other a lot of encouragement.

This afternoon friends Stan and then Keith came over for visits.  They notice improvement each time they come over.  Buddies supporting each other.  Again, this is all good for George, it lifts his spirits.

Today I phoned to follow up on a hospital bill for George’s neck surgery.  We had received an EOB for $290,000 that they said would not be paid because of one line item in the procedure.  I had phoned the hospital billing department last week to find out what this was all about and they were supposed to get back to me and had not.  When I checked today the gal went through the myriad of correspondence between various hospital reps and insurance reps and informed me that our cost would be $1700!  Phew!  That was certainly a relief for us!  But what a racket the insurance business is!?!?!?

We had thought that a CT scan would be done today.  However, the CT scan needs insurance approval and as of this moment we have not heard from the scheduling department so nothing is likely to happen until early next week.  George had lab work done yesterday for the two doctors to look at to see how things are going. As of now, the plan is to finish up the IV antibiotics tomorrow night (yippee!).  Then we will schedule up having the PICC line removed.  By Tuesday next week we should be down to just the feeding tube line unless he determines that we can be done with that as well.  I look forward to him being free of all these extra tubes and lines because then we can start living a relatively normal life again!  Modified…. But normal!

Tonight I think we are both just tired.  Am thinking that some sleep before the nighttime IV is on the schedule as I don’t think I will make it until 10:30-11:00.  It is amazing how tired one can be when one hasn’t done a whole lot during the day.  Normally I am the kind of person who can keep on going all day long and not be tired until my head hits the pillow.  These last few weeks have left me exhausted earlier in the day.  I did close my eyes for a bit this afternoon – not sleeping, just resting my eyes.  That did help a little bit. 

We look forward to a luncheon with some of George’s former colleagues.  It will be his first meal “out” since before surgery.  It is at the Olive Garden so he will likely do well with a bowl of soup, a tiny bit of salad and a bread stick.  It will be a time for him to catch up on what is going on in their lives and vice versa.  Though some are following my blog postings, sometimes it is good to catch up in person. 

The C Word – A New Battle Day 27 - Shaky Day

George sometimes has what he calls “shaky days”.  I usually have to ask what is going on as the issue could be emotional or physical.  Or a combination of both.  Today I think it was physical.  He was very tired even after sleeping through from 11:30 to 7:00 this morning, not even needing to get up for a bathroom break.  And he had fallen asleep in the few hours before 11:30 as well.

We didn’t take our morning walk because he was experiencing light-headedness.  I had discussed taking him to his barber shop for a haircut and we did go there, but he had two bouts of light-headedness in that short period of time.  Not sure what is causing this. 

I did send a text message update to Dr. B this morning including photos of the drainage from the pigtail drain so he could make an assessment from his end.  Dr. B phoned late in the day to go over how things are going.  I think he will be scheduling a CT scan for Thursday and said something about removing the pigtail drain on Friday.  But he had to go home and check George’s hospital records because he couldn’t recall when the last CT scan was and exactly what the findings were.  We should be hearing from him tomorrow about what he would like to do this week.  In the back of my mind I am trying to figure out what Friday will now look like since we already have plans (me to work and then both of us to have lunch with some work buddies).  Will see how this plays out since we did say Dr. Majumder wanted to see the CT test results as well. 

He was surprised to hear that George is eating 1000-1200 calories a day already.  We said that George took what he said on Friday as a challenge and has been working on that.  He seemed pleased overall with the progress and assured George that being tired and sleepy is quite normal even this many weeks out from surgery.  He suggested we monitor George’s blood pressure a couple of times a day to see if a drop in BP is causing the light-headedness. (On the “good” side, when I checked George’s BP I also did mine and was pleased that it was doing okay as well.  I struggle with BP even on meds and considering all the stress I’ve been under was glad that it appeared to be doing okay!)

Today I had a lot of pain in my upper shoulder/neck and have tried various things to get it to loosen up.  I’d hoped I could get a massage in on Thursday but the next opening available for the time I wanted is on Monday…. And, since it looks like there may be a CT scan on Thursday, I guess God knew I would be busy! 

Other than that, it was a typical laid back day.  I am still feeling quite tired and I think I dozed off once or twice today.  Although we did not walk this morning, George walked a little bit farther than usual to make up for it when we did our evening walk. As the day went on, George had started to feel less shaky.  Had a nice visit from a neighbor friend this evening and now George is “hooked up” to the feeding tube for the night. 

I am thinking about cutting back on journaling and maybe post every other day or so as there is not a lot going that’s new or unusual. 

The C Word – A New Battle Day 26 - Back to work

Today I headed back to work on a very modified schedule.  I need to take into account the times for administering meds as well as time for me to still get some rest.  For this reason, I will go to work for a few yours in the morning three days this week.  Next week I will increase that just a bit.  Fortunately, I can do some of my work from home. 

But they have missed me at work – as much as I have missed them.  My job, for me, has always been a place of respite.  This probably sounds very weird to most people.  However, when you love your job and what you do there, it is a place that offers “rest” from what is going on at home - - even when things at work can be stressful, it is not always as stressful as what is happening at home.  It is a place that I can delve into what needs to be done and not think about what awaits me at home.  It was true when I was caregiving for George’s mom – and it is true being a caregiver for one’s spouse.

Of course, after nearly a month of not physically being at work, the first day back is doing a little catching up on what happened while I was gone.  One of my jobs is showing people desktop magnifiers (called CCTV’s) and another is doing the actual intakes.  Before I left today I had scheduled 3 intakes to take place in the next week in the limited time I have available at work.  Those are some of the things I cannot do from home!  And those are things that give me great joy to do. 

On Wednesday morning I will go in so that clients will know that I still work there.  Many have noticed my absence as I am usually very visible on Wednesday Client Day.  Some do know that I would be gone but initially I was prepared for it to be only for about two weeks.  My leave went longer than expected.  They will be relieved to see me back.  I will pack a lot of punch into the few hours I am there on Wednesday. 

As is the norm lately, by early afternoon I was having a hard time keeping my eyes open and leaned back in the recliner to close them for about a half hour.  I didn’t fall asleep, just relaxed and closed them.  I look forward to the time I don’t need to stay up so late!  Only four more nights.  I will still need to administer meds late at night for about another week after that, but the ones I need to do will take only about 5 minutes and won’t need to stay awake for the length of an IV.  I can sleep early on, wake up to do the meds and go right back to sleep.  THAT will be so nice!  By the end of next week George will be done with all the extraneous meds and we can sleep right through the night.  I am hopeful that George will also be done with the tube feedings by then but am not sure how Dr. B makes that judgement call. 

Today the home nurse paid a visit and changed dressings and check the wounds, etc.  She was pleased with how things were going.  George also fielded some phone calls from co-workers and had a visit with one of his best friends, Steve. 

All in all a good day though we are both ready for a good night of sleep!

The C Word – A New Battle Day 25 - Living By Faith

We had a nice visit from my good friend, Dinah, and her mom today.  I always greet her with “Hi My Dinah!” and “Hi Mama!”  Very cherished friends.

She brought the bulletin from church and shared that today’s sermon was about faith.  How we are saved not for who we are and the imperfections of our lives, but by grace and by faith.  They shared that Mama has been praying for us a lot this past month – for George for healing and for me for strength.  Even as we sat talking, Mama would reiterate her prayers and we could see how fervently she prays. 

In the past I have written about a conversation I had with Dinah many years ago.  Her husband, Victor, went blind one day due to an aneurysm while he was playing tennis.  The pastor of the church at the time (I think she said it was Pastor Krumm) went to see her at the hospital as she was awaiting further tests and determining if surgery would be done.  She expressed her distress to him and said, “Why me, Lord?  Why is this happening to me?”  Pastor looked at her and said, “Why not you?”  She stopped in her tracks and just looked at him.  With those few words he was telling her that “God never gives you more than you can handle”.  She spent the next two decades juggling caring for her children, caring for her husband and working.  Obviously she kept very busy and it was not always easy for her.  But she always kept strong in her faith.  She raised three very lovely daughters who are each of great faith. 

As we chatted today we also talked about the fact that God already knows our questions, he already knows our lives.  Our human selves are always inquisitive.  We want to know why certain things happen to us.  We want to know that we will be fully healed.  We want to know that all will be well.  BUT…. The Lords’ prayer clearly states that “THY (God’s) will be done”, not MINE.  We don’t know the plans he has for us.  He answers our prayers in HIS time and in HIS way which is not always the way we want. 

While we hold on to whatever glimmer of hope we can get, we are real in that we don’t know what God’s answer will be.  We pray for healing…. We pray for there to be a viable treatment for George… We pray for him to be strengthened… yet we cannot help but realize that the answer we get may not be what we want to hear.  That can be hard to “digest”, lead us to be fearful of the answer. 

There is a song I heard a few years back, sung by Natalie Grant.  The name of the song was “Held”.  While the song is about losing an infant, there is a verse that resonated with me regarding the loss of Mike, the loss of my mom:

“This is what it means to be held
How it feels when the sacred is torn from your life
And you survive
This is what it is to be loved
And to know that the promise was
When everything fell we'd be held”

He promises to hold us during our times of earthly trials.  He promises to be there for us, to get us through some of the most difficult times of our life.  This is faith.  This is what it means to believe in the things we cannot see. 

So, too, will George and I get through this latest deck of cards that has been handed to us..  We do not know what the future holds.  We do know that God has a plan for us.  God will hold us and comfort us - - along with all of our believing and faithful friends. 

And we are humbled by friends such as My Dinah and Mama who pray fervently for us.  We are thankful for all of these people because there are times when we are doubtful, when we are fearful, when we just want to rewind the clock and go back a few more years and to a re-take on life. 

Progress report on George is that he is now eating over 1100 calories a day which should mean we can start cutting back on the amount of feeding tube.  His drain is starting to have less drainage.  We take two walks a day.  In general I think he is feeling better.  This week is definitely better than last week!

The C Word – A New Battle Day 24 - Spending Time in Recovery

Cancer and other major diseases affect not only the patient but the caregivers as well.  It takes a toll on both persons in emotional and physical ways in different ways but affects them both nonetheless. 

For George, the physical toll is immense.  To have so many major organs taken over a period of two years is, in some ways, catastrophic.  While he only had a large portion of one “organ” removed during this most recent surgery, the doctor reiterated over and over that this was a “big operation”.  As George’s body tries to adapt with the change it makes him physically tired.  After two years of surgeries and recoveries he is tired of being tired all the time and wonders if he’ll ever have any strength again. 

He has to keep reminding himself (like the last time), that he should not do day-to-day comparisons but week by week or looking back even more than that.  One day he does better than the next and he feels as though that is a step back until he looks at the bigger picture.  Then he can see improvement. 

We are trying to take a walk every evening – and maybe once during the day if time permits.  He is working on his 1000 calorie a day challenge and is doing pretty well.  Tonight I made bison burgers and gave him 1/8 of a pound as well as a few cooked green beans and a sliver of fresh pear.  His belly was a little bit disturbed and as I tried to give him his G-tube meds a short while after dinner I ended up allowing some fluid to drain off his belly. 

And, as he sits in his chair day after day the recovery takes an emotional toll as well.  Feeling helpless.  Frustrated.  Worried about the toll this is all taking on me as well.

As for me, I find that although I am sleeping better these past few nights, by midafternoon my eyes are needing props to stay open.  Just about the time I am ready to nod off, it is time to prepare for and administer the IV medications and wait for them to run their course.  Then I hop on over to the couch and close my eyes for an hour or so, sometimes napping, sometimes just needing to lay still for a short period of time. 

A good deal of my time during the morning is spent getting meds administered, putting together some breakfast for each of us, a few household chores here and there, and then cleaning the various ports and wounds on George.  A few hours later I can sit for a little while.  The middle portion of the day is the least busy for now.  And then the evening things start ramping up again.  Probably the hardest part is staying up to do the last of the meds from 11 to 11:45PM.  Our “normal” routine is to be in bed by around 8PM and I would be asleep by 9 or so. That routine is changed in the short term.  Maybe two more weeks of meds and feeding tube.  Once George is disconnected from things we should go back to our old routine.  For now, I will be a tad bit sleep deprived but functional!! 

The emotional part for me is watching George endure what he is going through.  Physically he needs help with things throughout the day so I am up and down, in and out of my chair fairly often. 

We are learning how to work together – with George knowing that there are times I just need to do my own things. He knows when I go to crash on the couch that I obviously need it and he will sit quietly and not call on me for anything.  Today he took a half shower for the first time in nearly a month.  It was quite an ordeal for him – and we used the shower in his mom’s place (now unoccupied).  It’s amazing how things we take for granted consume so much energy when one is recovering. 

 I will start easing back into my work schedule this coming week.  Since there are still 2 antibiotics and some pain meds to work with, I will get all the morning stuff completed early and then head to work for a couple of hours, needing to be home by noon.  The following week maybe more days but the same hours.  By the third week I should be able to do longer days as he will be done with all the rounds of medications. 

He looks forward to getting rid of all the “jewelry” as he call it (feeding tube, drain, etc.) as life will be so much easier.  I look forward to that as well.  

The C Word – A New Battle Day 23 - Progress made

Oh my goodness, it was so nice to have a large block of time to sleep.  Aside from 2 potty breaks (one mine and one his), we got to sleep from just before midnight until 6:30AM.  It was such a treat!

Today we had a technician scheduled to fix our refrigerator.  The tech was very good and had our refrigerator repaired in about 30 minutes.  He was also able to pull it out from its cubicle so I got a chance to clean the floor under it for the first time in six years.  I gotta say that it was not bad at all under it.  As I was prepping for the repair man I thought I would move food to the fridge in mom’s apartment… but, alas, it was warm!  Defunct!  And it’s only maybe two years old.  After the tech finished with our fridge we asked him to take a look at the other one to tell us if it is worth fixing.  We only paid about $300 for it as it is one of those half size fridges.  He got so intrigued with trying to figure out what was wrong with it.  He did figure it out but we don’t know if we’ll fix it or not since we don’t need it right now anyway.  (He didn’t charge us for troubleshooting it either). 

Dr. B sent a text today to check in on George.  After some back and forth he asked if George was eating 1000 calories a day yet.  We told him that he was not even close as we figure it is more in the 400-500 range.  However, George told him he was up to the challenge.  So today he ate quite a bit – a bowl of Raisin Bran with milk, a small bowl of minestrone soup, a good size sandwich roll with butter, and some ravioli with a little bit of spaghetti sauce on it.  I think he actually got to 1000!  Bravo!

The other thing Dr. B said is he wants George up and moving more - - so this evening as the sun was beginning to set we took a slow stroll.  Went to the corner and back and then the other direction a few houses and back.  Bravo again! 

I know it is hard for George to achieve these things – but when he does he feels the sense of accomplishment.  Way to go George! 

It is now time to hook George up for the night!  Looking forward to another good night of sleep!

The C Word – A New Battle Day 22 - MD follow up #1

I must say, when I do sleep at night lately, I sleep very well and very hard.  Getting up in the middle of the night to handle things has been like sleep-walking… just shuffling around to get things done.  My phone alarm shocks me awake!!  Because of the nurses schedule I had been unable to try to sync even one night of having all meds happen at once so I didn’t have to get up multiple times - - and was just about to do that tonight when….

We went to see Dr. Majumder.  He said there was no need to keep that kind of schedule (exact or close to exact intervals).  He said that for the 3 times a day antibiotic use a 7AM-3PM-11PM time schedule.  And, for the Vancomycin to work 4 times a day in during waking hours and get the last one done at 11PM as well.  Once the IV is done (about 45 minutes) you will be done for the night and can sleep until 6-7AM and start all over again.  In other words, it does not have to be precisely at 8 or 6 hour intervals.  Yippee!!  I can sleep tonight (unless George needs to get up to use the bathroom and then I have to unhook the feeding tube).  However, I do not have to fully wake up to do that task. 

After a little discussion and finding that white blood cell count is still good but C-reactive has risen a little bit, plus the fact that output on the drain is still significant, he asked George what he wanted to do.  We could stop the IV meds and wait and see.  If the infection had not gone away it would show up in a week or two and we’d have to start up again.  If it had gone away, then no worries.  George opted for the “be safe rather than sorry” and said let’s keep up the antibiotics because he doesn’t want to land back in the hospital for an infection and have to redo PICC lines,etc.

So… more meds are being ordered up and IV will continue for another full week with the Vancomycin going one week beyond that.  While it is pretty inconvenient to have tubes and lines everywhere, it looks as though they are here to stay for the majority of this month. 

George is actually feeling better.  He is eating a little more and moving about easier.  Probably should do an actual “walk” (and not just to the bathroom and back).  Maybe I can convince him to do a nightly walk so he can gradually increase his stamina and strength.  It will help him in more ways than one!  Although his appetite is definitely better, it is still not close to where it should be for nutritional purposes. 

We also contacted Dr. Bastidas to find out if he wanted to see George sooner than 8/23. Explained that the drain is still putting out a lot of fluid (actually has increased over the past 3 days).  My guess is he will wait but am awaiting a reply from him. 

Sara and the kids stopped by for a visit this morning, and one of George’s co-workers this evening.  Company breaks up the day a little bit.  It is good for both of us. 

Because I am pretty tired, I have not been able to focus on much these past few days.  With the change in medication schedule I hope that I can be more organized as the days continue.  Tomorrow I have a repairman scheduled to come look at our leaky refrigerator.  Not sure what the issue is but the problem is still persistent and may be getting worse.  I syphoned off 12 ounces of water from the bottom floor of the fridge the other day – and when I checked the lower drawer this afternoon it already has water accumulating at the back side of it so am certain there is more below that.  Ugh!!  Hopefully it is an easy fix – will find out tomorrow. 

At least for now we have another short term plan, one that should be manageable and make our lives somewhat easier for the duration of all the procedures that occur throughout the day.  I am hoping that I can actually get in to work for a few hours a few days a week and look forward to being out and about for little bits of time.  Looking forward to a little bit of “my normal” back after a very long month!

The C Word – A New Battle Day 21 - Finding our groove

Finding our groove

Today was all about settling into some sort of routine with the IV and G/J tube infusions.  Definitely feeling pretty comfortable with hooking/unhooking, flushing, etc. Hoping the IV ones will be stopped within a day or two.  We see Dr. M tomorrow for an updated assessment.  He is the one that makes that call.  If he says all is going well, the PICC line can come out over the weekend!  If not, it will have to wait a bit longer.

Our first follow up with Dr. Bastidas is on the 23^rd.  That means that the drain on his side will stay in for two more weeks.  Unless, of course, the drainage slows down and I would send a note to Dr. B to have it taken it out sooner.  Right now there is still 40-50cc’s draining every day, which is quite a lot.  Not sure where it is all coming from as for a period of time it had all but stopped - - - but has picked up rather than slowed down. 

George’s appetite is getting better.  Or maybe his appetite is not getting better but he is able to tolerate more food.  Ate a generous portion of Rice Krispies and milk for breakfast.  Not too much for lunch or snack during the day (1/2 and English muffin, a couple of baby carrots).  And he ate most of his half Panera sandwich plus the bag of chips that came with it.  That’s pretty good for him!!  I had a harder time infusing his meds right after dinner! 

Overall had a pretty quiet day.  I get a few things done but nothing requiring a lot of concentration right now.  I did go to my Spanish class today – and realize I need to put in more time studying AND practicing... but have no one to practice with. 

Last night my phone went off at midnite for a med call, but I didn’t hear it.  George had not been able to sleep so he did.  I heard him say, “Dawn, there’s an alarm going off!”  I was in such a deep state of sleep I jumped up and went over to the feeding tube pump and said, “It seems to be okay.”  He said, “No, your phone alarm went off.  It’s midnite!”  I did better at hearing the 2AM wake up call for the IV and stayed awake 45 minutes so I could turn it off and disconnect.  (That’s one reason I will be glad to not have the IV infusion in the middle of the night).  The pain and vancomycin are every 6 hours for another 8 days…. And hopefully then we can start sleeping all night, every night!

The C Word – A New Battle Day 20 - August 9 – then and now

It was a pretty quiet night last night.  At least we did not have constant nurse interruptions or unnecessary conversation taking place all the time.  Since the feeding tube and IV were not yet started it gave us a little extra time to sleep.  I had to get up at midnight for pain and antibiotics.  Had problems with the J tube – it was clogged so couldn’t do the pain meds.  Had until 6AM before the next round of the same meds.  George got up a few times during the night to use the bathroom but, thankfully, with using the recliner he did not need my assistance getting up and down to get there.  Still no luck with the J tube at 6AM so decided to wait for the nurse to help us unclog it. 

Today is our first full day at home - - yet it was JUST two years ago today that we got the diagnosis of cancer. 

Here is what I wrote in my very first journal two years ago:  “ I am not sure if I understand God’s humor and his wisdom right now.  I have yet to determine just exactly which one he is imparting on us right now.

Our day had started off ordinarily enough.  Getting Mom up and ready for Sarahcare, having breakfast, and then we starting off to accomplish a few errands.  In the middle of one of those errands George looked at me with a strange face and said, “Oh no.”  At first I was thinking he forgot his credit card but he then said that he was having the start of the same kind of pain he had when he passed a kidney stone back in 2007. 

We quickly went home to deposit the items we had purchased that morning and to assess whether or not a trip to the emergency room was in order.  In short order the pain level increased significantly and we found our way to the hospital.

Although we made it into a room quickly, we ended up waiting longer than the prior trip for a doctor or nurse to come in.  It was probably an hour before a pain medication was given and almost two before they hung an IV with liquids in it.  In the meantime George went through the routine test for kidney stone; blood and urine samples and a CT scan.  And then we waited and waited.

The doctor finally made his way to our room and the first thing he said was, “Do you have any other health issues going on?”  George replied that he did not and then the next words out of his mouth were shocking.  The radiology report indicated peritoneal cancer “seeds” that had metastasized.  He asked if George had undergone a colonoscopy and, yes, he had one done within the last year and it did not show anything cancerous.  He went on to say that we would need to follow up with our regular doctor for more tests to determine the point of origin.  And just like that our lives are turned upside down. 

Disbelief…. Shock…. Concern…. Worry… Plans?? 

Kidney stone?  What’s that?  Yes, he has a small kidney stone to pass but that seems so insignificant compared to the “C” word. 

Is this God’s sense of humor trying to make us scared and telling us that we need to appreciate what we have – because maybe it isn’t cancer, maybe it’s something else.  Maybe it will turn out to be something serious but something that is treatable and curable?  Will we laugh when we look back at this?

Or is this God’s sense of wisdom, allowing us to have a more time to plan and “end of life” plan.  If this is indeed what the initial prognosis is, it is not good.  If we had not gone in to find this kidney stone, this cancer would have gone undetected until very late in the game.  Too late to do any planning. 

Whatever it is, I don’t like it.  I don’t like it at all.  When Mike died it was totally unexpected, happened in a moment.  This time, if terminal cancer is George’s fate, I will have to watch it play out.  Neither way is acceptable. I can only pray that this is a treatable and curable cancer as that is easier to swallow than the other option. But God has a plan…. and now we have to wait a few more days for this plan to play out in our lives.”

And here we are today, home after 19 days in the hospital.  While we’ve had nearly two years believing that George’s cancer would be controlled by the first CRS/HIPEC surgery, today the picture is much different than that.  Still digesting the news of the latest surgery.  Aside from the “shock and awe” of a cancer diagnosis two years ago, the feelings are nearly the same.  The elephant has found its way back into the house.  This time we know what it is, we are able to speak about it for brief periods of time for now. 

The in home nurse came this morning and showed me how to do the IV antibiotic meds as well as how to hook up the tube feeding.  She described and then watched me do both.  She also watched as I cleaned and flushed the PICC lines and the wound area.  She was quite satisfied that I am competent in handling what needs to be done here.  The rest of our day was spent resting, napping.  I managed to go outside and do some garden watering and checking the sprinklers to ensure they are all working okay.  George has had a couple of small meals – still not very much, but more than he has eaten in a while in one sitting.  In a few hours we start ramping up our evening schedule as I get ready to hand his IV at 6PM (takes about 30 minutes to run) and at 8:00 hook up his “snack” (that’s what it was called in the hospital) which will run until 6AM.  I will need to get up at midnight and 2AM but hope to catch some good zz’s between 2:30 and 6:00 at least!  On Thursday we will find out if we can discontinue the IV meds and that will decrease middle of the night events.  Any extra sleep time is good!! 

We will settle into a routine for the next few days, a temporary routine.  As the days go on it should become somewhat easier to handle.  I can hopefully get in to work for a few hours next week in between medication treatments. 

Then….. and Now…. So much has happened in the past two years.  We have been through some unbelievable challenges.  It’s not done yet.  We don’t know what the next two years holds.  I hope I can look back at that point and say that things have gone much more smoothly than we expected.  Gotta have some hope!!

The C Word – A New Battle Day 19 - Discharge day

Oh my gosh what a very long, long day!  I arrived at the hospital at 6:30 AM and Dr. B was already there pulling staples and finishing up his exam.  Went over the meds George would need for discharge and he was on his way to write all the orders.  All we needed to do was wait for the discharge person to get to the office at 9AM and start processing.  I went to her office at 9:30 to see how she was doing with his papers and she said, “Oh, is he going home today?”  Duh!  I had spoken to her last Thursday in order to get things started in the way of approvals.  She knew we would be going home with a feeding tube and would need a home health nurse.  She just needed to find out preferred providers for that.  But she hadn’t followed through!  By 11:00 she had the vendor for the IV and feeding tube supplies and had located a nursing agency but had not heard from them.  It wasn’t until after 1PM when she finally did and they could not provide anyone until tomorrow so, “I guess you’ll go home tomorrow morning” she says.  NO WAY!!!  After some negotiations and figuring out what we could get away with, we determined that we would forgo the nighttime tube feeding tonight and would stay in the hospital until 6PM to receive the last of the antibiotics that would be required for the day and can start with the at-home dosages when the nurse arrives in the morning.  I then spent the afternoon running around to a couple of different pharmacies to get the medications and supplies that would be needed before returning to pick up George.

The nurses were very good about showing me how to administer the meds via the feeding tube that I will be doing tonight.  I am sure it will be awkward at first but between the two of us we will figure it out. 

We were very emotional when saying good bye to some of the staff.  After nearly 3 weeks some of them were like family to us.  We’d had some good conversations, both serious and funny, with a number of them.  I also brought treats in at various times for them to share.  Most of them worked hard to make us comfortable and tried to respond in as reasonable amount of time as was possible. 

We had some great RN”s:  Hardeep (we had her for probably 1/3 of the time, Akash (our favorite male staff), Jennifer, Claudia, Diana 1 & 2, Heidi, Amy, Janice, Mai, Mercy to name a few
Wonderful CNA”s Ana (had her quite often as well), Ernanette, Maria, Mark, Nanny, Kevin, Kulwant and Satinder
Housekeeping: Reyna – such a sweet lady
Nursing interns Jennifer, Chelsea and Christine

When we arrived home George sat in his chair and just grinned!  So good to be home.  He has control of his recliner, better TV selections, and is as comfortable as he can be in spite of tubes and drains everywhere!  Now I have to sit down and figure out my schedule of flushing, feeding, medicating, etc. 

The nurse will be here at 9AM tomorrow and show me the IV things I need to do.  She’ll need to come back on Wed. for lab draw and we see Dr. Majumder on Thursday for our first follow up.  Something tells me I am going to need to keep very focused for a bit!!  

The C Word – A New Battle Day 18 - Ruminating on the battle

For brief periods of time George likes me to sit by his bedside and chat.  He wants me to tell stories - - but I am not a very good storyteller.  (In truth, he just wants to hear my voice.)  Sometimes he wants to chat about stuff that is running around in his head.  And there is a lot of chatter these days, for both of us.  Some of the thoughts or questions he has tell me he is fretting about what is to come – and he is wanting to make amends for things in the past.  I assume this is all very normal feelings for someone in this position.  That position being that we don’t know of any positive treatments for this cancer which leaves a feeling of hopelessness that is beyond imaginable.  I can sometimes feel my heart breaking in two.  I fight back tears and keep praying for a miracle or at least for George to feel well enough to lead as normal a life as is possible until it is his time to take leave. 

In the past two and a half weeks I have run the gamut of emotions.  Just prior to surgery I was hopeful yet a little reticent as well.  My gut was telling me things were different this time around.  And, on the day of surgery when the schedule of events did not happen like the last time, I knew that things were not right.  But still, I kept trying to push those feelings aside.  I kept telling myself that the scans did not show a lot of activity and according to the specialist in San Diego, persons having a second HIPEC had a chance of “cure” or at least a long period of remission (NED). 

And in the span of ten minutes as Dr. Bastidas told me “we couldn’t get it all”, life as I/we knew it has changed immediately and forever.  One short phrase. 

As hard as I try, I cannot get the look on Dr. B’s face out of my mind nor the words out of my brain.  In the days that have followed we have had challenge upon challenge.  During the few “good” moments I have hope that things will return to some kind of normalcy.  But most of the time I know things will not ever be normal for us again. 

After Mike died, I ran the gamut of emotions associated with grief.  At least most of them.  I remember the psychologist was waiting for me to experience anger.  Anger was never my “specialty” – you know the whole ‘slow to anger’ thing rang true for me.  Pissed off is one thing – anger is quite another, it is much stronger.  Sadness is the stronger emotion for me, perhaps frustration which can look like anger but not exactly the same thing.  Mike died shortly after our 20^th anniversary.  As my sibling celebrate 25, 30 or more years of marriage – as well as many of our closest friends – I remember feeling sad that I would never experience a marriage that long.  When George and I married I thought, there’s a chance that we could at least get to 20 and maybe 25 (he would be 84 at that point).  After his first surgery there was still the hope we could make it to 20 as that was only 7 more years.  And now… now I don’t know if we’ll make it to 16 years (14 is in just a few months).  And that is totally unfair!  So much for the theme of our wedding, “Grow Old Along With Me”. 

There’s a part of me that wonders what I’ve done in my life to have experienced such tragedies as this. I know that it has nothing to do with me.  But it does nag at me now and again.  Rather, I think God put these two men in my life for a reason.  Both had “baggage” from past history and I’d like to think that I helped soften them with the way I look at life, the easy going way I tend to take things.  The fact that I truly believe that everything happens for a reason, that God has a hand in all of our lives.  And perhaps that is what God has done – given both of these men someone to love them in spite of shortcomings (and vice versa, because I know I am flawed as well!).  In George’s case he put me there to help with his mom and now with him as he goes through some pretty horrific times.  I guess I should have been forewarned when George fell off his house after we’d only been dating six months and I helped care for him then.  I should have known that George needed a help-mate in his life, someone he could trust and depend on.   God put me in both of their lives for sure.  It was not coincidence or luck. 

We had an interesting chat with our nurse, Akash, a 26 year old young man.  He has been so kind to us the times we have had him assigned to George.  Last night he stopped by our room to change out the feeding tube solution.  We had found out earlier that he was single and looking to start dating now that he is settled into his job here in the bay area.  We said to him, “we need to find you a young lady”.  He said he planned on going to match.com after hearing our story the last time he was on our shift.  We asked him if he was a believer, a church goer.  He responded that he was and proceeded to tell us a little bit about his background.  We chatted about faith.  We talked about how God sends messages and messengers.  George expressed to him about how this disease has affected him physically and spiritually and how it has also affected me.  We told Akash about the fact that I have been a caregiver for not only George but also his mom.  Akash said that perhaps that was why I was “sent” to George, that God had that plan in mind.  Kind of interesting that I’d thought about this myself – and here was a “stranger” validating that God has plans and purposes for everyone.  And that no matter what, he said, George had a place waiting for him with Jesus.  It wasn’t those exact words, but it was along those lines.  I pray God bring a kind and wonderful woman into Akash’s life.  Such a sweet young man. 

This morning as I listen to “Here as in Heaven” and the lyrics stated that “the Spirit of the Lord is here, the evidence is all around”, I think about some of the nursing staff here that have ministered to us and with us in their care for George.  Akash is not the first one to “wax philosophical” with George during a stop into our room.  We are grateful for these tender believers, these kind spirits that have helped us during our time at the hospital.  We have been surrounded by some wonderful angels – nurses, nursing aides, doctors, and so on. 

Just before leaving last night as George and I had our nightly bedside chat before I left, we talked about what is in store.  I imagine we will have many more of these types of talks.  While I hate to be morbid and think the worst, we have some serious reconciliation to do in regards to the turn the cancer has taken.  We are in disbelief at the rapidity in which the recurrence took place and the fact that HIPEC will no longer be an option as the tumors are too numerous and too large for the chemo to work on.  Our future will be filled with more hospital stays and difficult decisions to make.

Last week I had to make a difficult decision to cut back my work hours, at least for the time being, because I need to take care of George.  I can’t guarantee when I can make it in to the office.  This caused me much angst as I truly love my job, my coworkers, etc.  It is probably one of the most ideal positions I have ever had in my entire life. It’s like to polar magnets pushing and pulling, wanting to do both but having to come to terms with the fact that I can’t do it all, at least for right now. I feel really, really bad because our staffing has dwindled quite a bit over the past year and a half to the point we are a skeletal crew – and I know how much my not being there will affect things.  My heart aches that I had to come to the realization I cannot go to work AND be available to help George.  They have agreed to let me work remotely as much as I can – and for the most part much of the work I do can be done remotely.  But my physical presence to jump in and help is as much a part of the job as well.  Hopefully as things settle into a routine, and once George is off the antibiotic IV and the feeding tube I can resume putting in some hours at work again.  Work has always been my “respite” from the rest of my life.  When things are difficult at home because of the stresses, I go to work and feel as though I am accomplishing something and making a difference to others – and that regenerates my soul.  I truly have missed that these past weeks.

I also know that my days with George are numbered.  We don’t know how many.  A few years at the very least is what we hope for.  We also know that there are bound to be complications that will upset the apple cart.  We know that there are likely to be more hospitalizations given that George has very little bowel left and could get obstructions given that there are tumors still on what is there.  We are acutely aware that additional surgeries can result in less than stellar results and quality of life.  I feel that I should be spending as much time with George as I can – while still balancing my personal space and needs to get out and have fun sometimes.  Hoping for more fun times with George, too!  And wanting the flexibility to just “get up and go” when the opportunity presents itself.

It’s been a rather surreal few weeks.  A little over a month ago we were planning on spending time going away on weekends and just enjoying some down time now that Mom has been moved to a care facility.  In the past few weeks we have become so disconnected from whatever is taking place in the world around us.  I at times feel so cut off from the world (that can be a good thing, because I am not hearing about all the crap going on).  At times I get lonely because I just sit for hours and hours with George who sleeps a lot.  Yet when he is awake he has me jumping up and down as I adjust pillows, blankets, assist in and out of bed for bathroom trips or to sit in a chair for a spell.  I can’t wait until he is home so at least I can get a few things done around the house while he sleeps - - or take a nap in the comfort of my own home.  I awaken early some mornings and feel the terror inside me, the fear of the unknown.  When it is time to get up in the morning I am still so tired.  Though I am getting the same amount of sleep I normally get, it does not feel as though it is enough.  At least when we are home there won’t be the interruptions of vital signs, room cleanings, extra meds, etc.  And I will be able to go outside and breathe fresh air, see and feel the sunshine that might make me feel a little more human and a little less isolated. 

On the flip side – at home I do not have nurses or aides at beck and call.  I will need to learn how to hook George up to a feeding tube at night and administer IV meds a few times a day as well.  A nurse will come to show me how and, I assume, will stop in daily to check on things but I don’t know for sure. That will be the routine for at least a few weeks.   I once again will be responsible for ensuring that George gets all his medications on time throughout the day. (I have learned that doing this on his own, especially in the weeks post-surgery, is hit or miss as he would often forget!)   I already have the baby monitor set up so I can be in other parts of the house and still know when George needs help. 

Understandably this is just the beginning of this newest battle and we don’t know where it is going yet. Take each day, each moment as it comes.  I will cling tight to my faith.  I will lean on friends and family for mental, spiritual and physical support.  A note from Sara at home tells me to “BREATHE”.  I will need to be reminded of that.  … a lot … Thank you, Sara, for the visual reminder!

The C Word – A New Battle Day 17 - Remarkably Unremarkable Day

It is Saturday - - not that it means a whole lot when all you do is sit around all day.  For most people it would be their “day off” from work.  I used to think that one would get more visitors on Saturdays or Sundays - - but that has not proven the case at all for us. Often it seems quieter than during the week.  A weekend visitor has been rare for us.  And sometimes that makes the day just drag by so slowly.  You see, George relies on me for everything from personal care to “entertainment”.  His latest thing is to have me read to him as he says it is hard for him to read.  Today I read a bunch of stories from the Readers Digest he had me purchase for him earlier this week.  However, this is a catch 22 situation.  For he finds my voice soothing - - and then he falls asleep.  Sometimes if I stop reading he wakes up and I continue on.  For me, while I find the fact that I am soothing to him – I am boring to myself.  I’m more of a “silent reader” and a speed reader.  When I read books I don’t read every printed word on the page.  I skim through words, getting the gist of a story without feeling the need for every detail.  Guess that’s the difference between George and me.  He is detail oriented – I am definitely not a detail oriented person (at least most of the time). 

I had animal problems this morning.  I woke at 5AM (after about 6 hours of sleep which normally is enough for me), but was still so very tired.  I couldn’t get my Axx out of bed!  LOL!  I stayed in bed until 6:30 but never really went back to sleep.  I’ll likely be sleep deprived for a long time to come… catching naps as I can. 

Both Dr. B and Dr. M were here earlier in the day.  Both are targeting Monday morning discharges.  They have to give the discharge staff all kinds of information in order for everything to fall into place for discharge.  The PIKK line will remain in as that is how George needs to receive IV antibiotics for about another 8-10 days.  Feeding tube pump or contraption needs to be ordered up as do the bottles of nutrients for that.  Dr. M will put in the order for Vancomycin but says the type of antibiotic (pill, capsule or liquid) will depend on the insurance company plan.  Not sure if I have to do some running around ahead of discharge or not. 

Tomorrow morning will be the last blood draw and last CT scan for this hospital visit.  Dr. B wants it in order to determine if the drain can be removed before going home.  Wants to double check that no other abscesses have popped up. 

George is looking forward to coming home.  He says that last night was horrible.  Had a hard time sleeping because of all the noise outside in the hallways.  And people turning on lights and forgetting to turn them off.  And furniture being dragged around.  And he could hear all the alarms going off all night long as peoples IV’s kept beeping for whatever reason they do so (occlusion, air in line, out of meds, etc.)  He says it was a long, long night.  He’s been napping on and off all day to make up for it.  He started using his CPAP unit again (he hasn’t used it for nearly 2 weeks) so he is in bed with all kinds of air coming out of his mouth - - but he’s asleep.  And rest is good for him.

The C Word – A New Battle Day 16 - How time flies

So, today is our 16^th day here at Good Samaritan Hospital.  Since he is not going home, this means that we are surpassing the stay we had after his first surgery in 2014.  It was 16 days.  This one appears that it will be 19 or 20 days. 

Today Dr. B removed half of the staples and today is the LAST day of TPN.  They will turn it off when this bag is done in hopes that George’s appetite will increase.  Currently his appetite is suppressed as he is receiving 2000 calories via TPN and 1000 from the tube feeding.  By taking out the TPN, he should start wanting to eat more.  The ultimate goal is that the tube feeding be done at night to supplement whatever he eats during the day because it is unlikely that, for now, he will able to eat enough calories for healing.

The main holdout for this visit is the antibiotics for the colitis and CDIF.  The colitis antibiotic is via IV every 6 hours.  Ideally you should not go home requiring that much IV meds as I believe a nurse needs to come out and administer those.  Dr. M is the driving force for when we get discharged.  And we already know he needs a few days to see how things proceed.  New target date is Monday or Tuesday.

It is so hard to believe how long it has been since surgery day.  Each day melds with the one before, most of it without much change.  If it weren’t for light coming through the shades we would have a hard time distinguishing between night and day. 

Unbelievably, it is August!  More than half way through the year.

And, today is Stephanie’s birthday – George’s papoose!  He remembers a day she came out of a restaurant and she had saved some French fries in her pocket so she could have a snack later.  She helped him build a wooden shed in the back yard for garden tools.  He remembers the day the two of them went fishing.  Stephanie is the only one that caught anything that day.  He was very proud of her when she was involved with ROTC.  She learned some great leadership skills.  He remembers how much she enjoyed having high tea at the Empress Hotel in Victoria, BC.  He remembers how she cheered on the cops one day when they caught a perpetrator in their front yard.  These are just a few of the special memories he has of her.    It is hard to believe she’s “all grown up”! 

Today we appreciate the young woman she has become.  We love her fighting spirit, her sassiness, her contagious laughter.  We admire her for her tenacity in fighting her disease as we know how difficult some days can be.  She is kind and loving and creative.  We wish we could be with her today as she celebrates her 33^rd birthday.  HAPPY BIRTHDAY dear daughter.  

The C Word – A New Battle Day 15 - Improving by micro-bits

I spent the evening doing extra loads of laundry and put another load in this morning set to wash this afternoon (I love having a timer to have the laundry go on later as it ensures that the wet laundry doesn’t sit all night or all day until I can get it into the dryer). 

Before getting to the hospital I did a quick stop at work to pick up some things.  By the time I arrived here at 7:30 Dr. B had already paid George a visit.  George doesn’t do a great of reporting to me so he sometimes misses some details. 

George slept quite a bit this morning – most notably was the fact that bathroom trips are less than half of what they were yesterday.  So the antibiotics seem to be working.  Dr. M (the infectious disease doctor) paid another visit just a short time ago and checked things over.  He said, again, that he wished he didn’t have two things to treat at the same time because the Vancomycin would be more effective if he didn’t have a second antibiotic.  He told us that George was the toughest case he has right now – and that he would be checking in on him every day for the next few days to see how things are going.  He said that it will be a few more days before he knows for sure.  This is not an exact science.

Of course, George is discouraged that he won’t be going home tomorrow.  I had already figured that out.  He asked me how I knew.  I told him that the TPN dosage is still quite high.  In order to go home the doctor would rather he not be on TPN and be on feeding tube only.  I also knew that the CDIF and Colitis issues were going to take more than a few days to resolve.  His labs are still all catawampus – in fact, he received another unit of blood today because he is anemic.  There are still issues that need to be resolved before he can come home.

I am responding far less frustrated than the last time.  It is what it is.  I think the fact that I am allowing myself time at home helps so that I can remove myself from the four walls.  George really would prefer that I stay overnight still, but with the CDIF things, I just feel I need to go home and wash up so that I can stay healthy as well. 

This blog is a bit late posting because for the last hour before I left George wanted me to sit next to him and rub his arm and hands as he was cold.  We sat and chatted for quite some time.  We talked about what he thinks about all day when he is not sleeping but resting.  We talked a bit about what happens from here.  I know one thing for sure... I do not think he could endure another surgery like this one.  We had expected this surgery to be “a breeze” and he would be home in 7-10 days, quicker than the last time.  Instead, we have had multiple complications that we aren’t sure are over yet - - and the stay is ending up being longer than the first time.  The abscesses and CDIF and Colitis have taken their toll on him physically and mentally. 

George has a hard time seeing his progress.  Certainly some days are better than others.  Bit by micro-bit he moves forward – more like a crawl than a sprint.  Another weekend in the hospital.  For George it feels like an eternity.  

The C Word – A New Battle Day 14 - Now What?

After the girls went to bed I went and sat outside and did my praying and crying out to God.  Voicing everything I had in me as I tried to reconcile with all the events of the past two weeks. Then I climbed into bed for some rest.  I was thankful for a good night of sleep. 

I returned to the hospital at around 8AM to find George sleeping quite soundly.  I did not interrupt his sleep as that would start soon enough as nurses made their first morning rounds.  I inquired with his nurse about the CDIF results, she checked the computer and they had not come in yet.  They did shortly after that.  It turns out that George has colitis AND CDIF.   One probably begat the other.  As soon as CDIF is determined, paper gowns and gloves are donned by anyone entering the room.  Oh joy!  At least a mask is not required. 

The infectious disease doctor was brought in for consult.  He looked over George’s history and then came and paid a visit.  We know from experience with Mom that Vancomycin is the drug of choice for CDIF.  However, that won’t work on the colitis.  So George has two forms of medication to take.  Something via the feeding tube for the colitis – and vancomycin via the G-tube for the CDIF (that puts it right into the stomach so it can feed right into the intestinal tract).  The infections disease doctor is not sure how these two will work in tandem with one another because the one for the colitis could actually activate the one for the CDIF.  Very confusing!

George was scheduled for a CT scan today and, indeed, had received the first bottle of barium.  Then Dr. B put that on hold because he believes the issues George is having stem from the colitis and CDIF.  They will check George tomorrow to see if he is responding to the medications and may still do a CT scan.  Just not today.  We are bracing for him to expel the barium!!  A CT scan is still not out of the question for tomorrow or the next day. 

George inquired about the discharge date changing because he doesn’t think Friday will work but Dr. B says that it could still work out.  Have to see how George is doing on the antibacterial meds.  I would not be surprised if it took just a tad bit longer to ensure that everything is lined up.  Doctor still doesn’t know exactly what “equipment” and supplies will be needed at home and the case manager will need that in order to help me get those set up for home delivery, as well as contact an agency for a home health nurse. 

The dietician came in today and wants all of George’s food intake recorded for 3 days as Dr. B wants to see caloric intake in order to determine if TPN can be stopped.  Unless something huge happens, the caloric intake will be very, very low.  The nurse encouraged George to order up a few things and see if he can get some nutrition via mouth. He did order a variety of things for dinner and ate about half of what he ordered (rice, mandarin oranges, applesauce, and milk).  That was a REALLY good start!   Dr. B says the PIKK line will come out before going home - - so it may take a bit before he eats enough to get the TPN out!  I think as the TPN is dialed down the feeding tube starts getting dialed up.  So far he has been on a very slow feed for that. 

He was more alert this afternoon than he has been in a while.  Even turned on the TV for a short bit.  We’ve done a little chatting.  I started reading a book by Joel Osteen to him as he rested.  He is anxious again about my going home so will ask for Ativan before I leave this evening.  Last night when I left, CNA Ana did a fabulous job helping him in and out of bed.  She is passionate about patient care. 

While today offered yet another setback, it is ending a little more positive.  The unfortunate thing about CDIF is it takes quite a while to get under control – and once you have it you are more prone to subsequent bouts of it.  I will need to go home and do a thorough cleaning of bedding and clothes as we are not 100% sure that he hasn’t had this for some time.  It is likely that the incident started here – but just to be on the safe side.  There will be a LOT of handwashing – as the antibacterial gels don’t get rid of it…. Mainly bleach, water and soap.  (That’s also why I am going home at night, to shower and wash my body and hair after being semi-exposed to him all day.) 

I am also finding I am having to consider some tough choices about what I need to be doing in not only the coming days and weeks but down the road.  That made for an emotional mess of me this morning.  The CancerCare Point social worker called me and I was in the midst of a tough email.  I could barely talk to her.  When she asked “what do you need?”  And all I could say is, “I don’t know what I need.”  It’s one of those things that you cannot describe.  You cannot put into words.  It’s sort of like when George tells the story about the initial diagnosis and the doctors answering questions.  He says, “They’ll answer every questions you ask them - - and not a one that you don’t!”  It’s like that now – we don’t always know what questions we need to ask, we aren’t sure where things are going and what we need because this is unchartered territory for us.  Our lives are being turned upside down and we are trying to figure out how to land with our feet on the ground – but we’re still up in the air and can’t see the ground just yet.