The “C” Word – 1 Year plus 124 days Disastrous, Dastardly December

This could easily go down in the record books as one of the worst months ever!  Just when you think things are falling into place, something upsets the dominoes and they fall haphazardly all over the place.

We started out the month having a surgery date in place for February 5, 2016.  Then, of course, there was the terrible fall that fractured George’s neck vertebrae.  He spent nearly a week in the hospital learning how to move about with his brace and get his medications under control via oral medications in order that he be able to come home. 

Within an hour of arriving home his new chair arrived and he has, just as I figured, spent at least 80% of his time there.  The first few nights he slept 11 hours without moving a muscle.  He was still on some pretty high dosages of medication so he was, for the most part, comfortable.  As comfortable as one can be in this awkward brace.  But it does require a lot of work on my part – between adjusting blankets behind him, helping adjust the brace, getting things for him in the way of food, drink and sometimes just picking up things that he has dropped.  There are some days I hardly had a chance to just sit and relax because every time I did something happened and I had to get up and “do” something. 

I had arranged for several friends to come spend the day with George so that I could go to work.  Lan was insistent that he not be home alone during the first few weeks.  The medications can cause some instability and the last thing we need is for George to take a tumble and finish the job. In our case we were very lucky that he did not sever his spinal column… he came close, within 2mm so it would not take much more to effectively cause much more damage. 

George did not like the fact that I arranged for “sitters”, but the people that were able to come over were able to have some great conversation with him so that the hours would go by as quickly as possible.  One of the side effects of the medications is that they made him very loopy AND very talkative.  My goodness, I don’t think I ever heard him talk so much.  In fact, it got to a point that I told him that I would probably start leaving the room when he told the story of what happened to him and the treatment, etc. because not only had I heard the story many times already, but there was never a “short” version of the story.  It would take him 30-45 minutes to get through and whoever was the recipient of his tale did not have opportunity to inject a word in edgewise until he was done.  He did not believe me when I told him that - - but it was true - - and, as I have to remind him from time to time - - I  am not the one on any medications so my facts will be closer to truth than his. 

By the first weekend home we were starting to, more or less, settle in a little bit.  I did manage to get a little more cooking in for the holidays and such – but only because I had stocked the house before or during George’s hospital stay.  We were looking forward to having the family here for Christmas day.  All was going fairly well.  I started to wean George off the heavy duty medications ever so slowly so the after-effects would not be hard to take. And then, things started to go downhill once again.

On Christmas Eve morning George awoke with terrible ear pain.  He asked to have hydrogen peroxide drops in his ears.  This was a great feat because he cannot bend his neck or lean over very far in the brace to do this – but we managed.  He said his ear felt better after doing so and we went about our day of final preparations.  The kids all arrived on Christmas Eve and we sat around and chatted and laughed.  By the time we wound down it was midnight and I headed upstairs to go to sleep.  I turned on the baby monitor (for Mom) and heard her voice.  It is not unusual for her to sometimes talk in her sleep – but as I listened I heard her say, “Please help me.  Somebody please help me.”  So I ran down the stairs to her bedroom thinking that she had fallen or something (even though I had not heard a fall).  She was lying in bed and stating that she had to go to the bathroom.  I told her to get up and go but she wouldn’t budge.  I finally tried to help her get up but she couldn’t/wouldn’t bend at the waist or at the knees and I couldn’t lift her on my own.  I laid her back down in her bed and told her that if she went in her pants that would be okay because she had depends on.  After five or ten minutes I went back upstairs to bed – of course, now I am wide awake.  Forty-five minutes later I heard the same call for help and went back downstairs.  Again, she could/would not get up.  Again, I explained that she could lay and go in her pants if necessary because she and her bedding were all protected.  Rather than go upstairs I decided to sleep on my new recliner so I wouldn’t have to go so far if she needed help.  Forty-five minutes later another cry for help.  I then took my pillow and blanket into her bedroom and curled up next to her to see if I could get her to settle down.  That did not work.  So I made an effort to get her to her bathroom.  This time, while I could get her to stand up, she required full body support.  I wrapped my arms around her and I walked backwards to get her to her bathroom.  After getting her on her toilet and changing out her panties I stood her up and did the same walking routine – but decided to let her sleep in her recliner rather than go all the way back to the bedroom.  Got her tucked in – and walked out to go back to bed to find the twins standing in the hallway near Mom’s bedroom.  I asked, “What are you guys doing awake?”  Their response, “We’re cold…”  Yeah, right.  I took them back upstairs where they’d been sleeping in my bed and we all went to sleep (mind you, it is now 3AM).  At 5 AM they were wide awake!  I turned on the TV for them so I might get a little bit more sleep.  Very little… I told them that we could not go down until 7AM.  They waited patiently, for the most part. 

Christmas day was a lot of fun.  Between stockings, and breakfast and gift exchange, we all had a great time.  I left Mom to sleep all morning since she’d been up most of the night.  That gave us an opportunity to just relax and have a good time.  Most of the kids were gone by noon so we had a relatively quiet afternoon.  The twins thoroughly had fun playing with their new American Girl dolls that Santa brought. 

By Christmas night, however, George’s ears were bothering him more and more.  He was in excruciating pain.  Good thing we had strong meds on hand so I just ramped them back up to where they’d been after getting out of the hospital.  They only partially worked however.  So Christmas night I was up on and off all night every hour and a half doing something for him.  Night two of very little sleep.

Took George to urgent care on Saturday morning and yes, he had a double ear infection.  Woo hoo.  More medications.  Since it would be a few days before those did their thing, we stayed on some of the heavy duty drugs for just a little while.  On Sunday we had a pretty quiet day.  Mom was doing okay.  George was on the mend.  Yippee.  Things are turning around…. NOT…

On Monday night Mom was coughing a lot all night to the point that she was weak the next morning.  Rosemary took her to the doctor and… once again, she has pneumonia.  This morning she was pretty weak because she had still been coughing up a lot during the night.  While she did go to SarahCare she was pretty tired and required an extra hand to get out to the car.  This evening she was falling asleep early so the caregiver put her to bed a little early.  Right now she is not coughing too much – but he was so very tired.  Hopefully the meds are doing their thing and she will get a lot of rest right now.

On top of all that, we had the first follow up for George’s neck on Tuesday morning.  He had hoped they would say they saw some healing going on but that was not the case.  In fact, Lan said that she did not expect to see healing.  She mainly wanted to see that the bones were not shifting which means that the neck is currently stable with the brace in place.  She does not expect to see anything happen for at least a few more weeks and will have us see the neurosurgeon at the end of January.  She feels that the healing will require a full three months at the very least.  This was all discouraging news for George and by the end of the day he was feeling quite useless and depressed about the turn of events. 

The twins have been with us for the week and tonight is their last night with us.  We have had a lot of fun with them.  I taught them how to play Yahtzee, we did a couple of ice cream runs, they played very well together this week for the most part.  They have been very sweet with George, even playing “nurse” to observe him shaving and help where they could. 

Tomorrow is Christmas Eve, a time when most make resolutions for the new year.  For me, I just pray for strength to keep it “all together”.  For, as frustrating and discouraging as it is for George, everything that happens to him AND his mom affects me as well.  Having the two weeks off for the holidays has not been especially relaxing for me as I have had to cope with ear infections, neck pains and brace issues, pneumonia, etc.  I pray that all the medication start doing their thing so that I can perhaps relax for at least part of the weekend! 

I already know some of what will take place in 2016 and it will be a very busy year.  For work I have to transition to a new database that was installed over the holiday week – to train the staff in how to use it and also figure out how to build out reports and such.  There will be more incorporations to it in order to have not only a client database but a donor and volunteer one as well.  A grant for 2016 will allow us to do more for our older clients but there is a lot of work involved and some extra training that we will be able to do (including learning Spanish) – so I have more hours incorporated into my work weeks for eight months.

On a personal note we will have to deal with whatever comes our way in regards to George’s neck issue.  Will the neck heal and fuse on its’ own or will there need to be an 8 hour surgery.  Whatever treatment works, we know that once we have that stabilized and healed we will be re-scheduling the cancer surgery.  That means another 7-8 hour surgery PLUS the recovery time afterwards.  2016 will be, for George, a year of healing/recovery and surgery/recovery.  For me it means my caregiving role just got extended and will last most of the year.  As long as George has a brace on he can do no driving which means I get to handle any of the errands, doctor appointments, etc. on top of working.  With Mom’s health being declined recently (oh, I forgot to mention that not only does she have pneumonia but she also managed to fall three times this past week prior to the pneumonia!), there is a constant need to monitor and assist the caregivers to keep up with the changes. 

As we keep saying, God never gives us more than we can handle - - we just wish he would slow down a bit on the demands!  This is exhausting – frustrating – sometimes discouraging work, and the work is never done.  While George is frustrated that God has not yet revealed to him what he should be doing with his life, the only thing I can concentrate on is getting through the hours and days at hand.  The future will reveal itself in time, I only have time and energy to expend on what is needed in this very moment and the ones immediately following. 

So, my main wish for 2016 is to just get through it!  I see a lot of adapting and caregiving in the year. Lots of changes to take place even many I do not know about yet.  I think, once it is all said and done, that we will be able to get our lives back. It is just going to take some time to get there.

While December has been disastrous and dastardly, I can only hope that January will bring some joy.  … not as much for me but for George.  I pray that his neck heals n less time than expected, I pray that the second surgery is approved and that it rids George of all visible and invisible cancer cells.  I pray that I have the strength to get through whatever happens to George and his mom over the course of the year and that I have the wisdom to not repeat some of the same mistakes I made the first time around.  

The “C” Word – 1 Year plus 124 days Major setback

Just as we thought we had all our ducks in a row for the next surgery, George went and took a tumble in the bathroom and ended up breaking his neck.  He did not know that is what happened, he just figured he hit the wall hard and it was his head and upper back that were injured. 

After he fell, he managed to painfully get himself into the bedroom and lay down.  After trying to reach over the mountain of blankets to get the house phone he remembered that his cell phone was on his belt buckle the whole time.  He called me at work to please come home.

I found him on the bed in major pain.  He could not sit up at all on his own (he tried by elevating the adjustable bed).  I told him we should probably call 911 because he could not get up and I could not assist at all.  We live on the second floor of our home and the stairs were not going to be possible.  After hemming and hawing and after taking a pain pill that did not work, George surrendered to not only my advice but that of a nurse friend and also his general physicians nurse and I called 911. 

The emergency crew decided to take spinal cord preventative measures and put him in a full cervical/spinal brace for the ride to the hospital.  After getting checked out they saw a break on the C6 vertebrae and some torn ligaments across the back of his neck which were or had been bleeding so he needed to be admitted for observation.

The next morning the neurosurgeon, Dr. Menon, came in and told him that if the break had gone just 2mm more it would have also affected his spinal cord and left him paralyzed from the neck down.  We are SO fortunate that this sort of break did not occur. He also tore a whole lot of ligaments across the back of his neck and that is probably what is causing the majority of pain issues. George was in excruciating pain and was being given a lot of medications to try to help with that.  The NP (nurse practitioner) Lan started taking control and she got a full CTO (cervical thoracic brace) for him which not only holds his neck stable but also his upper spinal column.  The doctor thinks that the break will fuse back together if the neck is held immobile for 6-12 weeks minimum.  Along the way they will re-check to see if the bone is fusing or not.  If necessary they will make changes along the way.  The first step would be to get a “halo” brace and if that did not work then an 8 hour surgery would be required.  We are praying that this brace does the job.                                        

[Note:  George’s C1-C7 vertebrae had fused from seven bones to one long bone, something akin to ‘candle waxing’.  What broke was the “extra bone” growth that fused C5 to C6, not the original vertebrae itself.]

The first few days were very hard. Any movement and George’s pain level would spike from a 2 or 3 up to a 9.  He required IV quick acting drugs before he made any small move.  Yesterday he had very few spikes.  Today, without any IV drugs he never spiked higher than a 5 or 6 on his scale and those were very brief.  The Occupational Therapist had him walk around the “block” today and he did okay.  We asked a few questions for when we go home and that was the end of it.  Both the OT and PT are pleased with his progress and how he is moving about.  Tomorrow will be final “rest” day here and we hope to get our walking papers on Monday morning.

We will have to make some changes for a bit – lots of them.  George will now sleep downstairs in the guestroom for which I have ordered a 12” wedge to enable him to sleep better.  I also decided that we aren’t getting younger and, in order to have George as comfortable as possible I am going to get rid of the smaller sofa in the house and replace it with two lift/recliner chairs.  This will really benefit George as the furniture we have is not conducive to getting up and down out of them very easily.  I suspect that his new chair will be where he spends at least 80% of his time for a long time!  The second chair will be for me if I would like to sleep near him.  Not to mention that I will love being comfortable as well!  A big thanks to neighbors Steve, Ken and Kevin for moving the couch out to the garage so I can get the area ready for the new chairs!  I will have to rely on others to do any “heavy lifting” in the near future because George is not allowed to lift more than 5-7 pounds – and definitely cannot bend over to assist in any way!

All the plans he had for being “free” and spending time in Roseville with his grandkids and tinkering in the garage have fallen to the wayside.  Those nice long walks he made three times a week with his buddies are done for the time being.  Probably the most significant change is that we have to postpone his cancer surgery until a later time next year.  Fortunately, the cancer is slow growing so it should not make a huge impact.  This will also give an opportunity to see how the two tumor areas do over the next few months which will give us an idea of how much or little they grow and if any other tumors show up.

George is making peace with those changes.  He is frustrated, of course, this happened to him.  It would be easy to take a “woe is me”, “why do these things keep happening to me” stance.  Very easy.  We are both coming to terms with the changes this accident had on us – trying to stay strong for one another.  George wants to be a “better patient” this time because he knows this impacts me as much as if not more than it does him.  It certainly puts a monkey wrench on certain aspects of our lives that is for sure!  I have had time only for one quick “pity party” so far.  I am not fretting about what will or will not get done in time for the holidays.  Those Christmas goodies may or may not be made in time. I can barely think about what should be done tomorrow let alone in a week!  I keep a pad with me to jot down things that I need to bring for home or look up because I surely will forget if I don’t.   I think once we are home I will have more time to get things done at home.  For now I am at the hospital for 10-12 hours a day.  It was more for the first few days but now I try to get home by 8 or 9PM to give myself time to unwind.  By the time I do that I literally fall into bed and sleep soundly for about 6 hours.  Then the brain starts working and I wake up to start gathering things for the day and get a chore or two done before heading back to the hospital.  It will be so much easier when we are all home again - - different, but easier.  

Two steps forward and one large one back.  We will get to where we are going… it’s just going to take longer than we anticipated.  

The “C” Word – 1 Year plus 118 days T minus 2 months

Sometimes I feel as though this cancer thing is a merry-go-round… of course, not really merry. The wheel goes round and round and each time it passes the starting area you wonder when it will stop.  You are having a good time going around but each time you pass the carnival worker you worry that he will end it too soon.  It’s that way when seeing doctors now. Each time you see them you are reminded that cancer is in the room. 

Of course, just like life itself, having cancer is more akin to being on a roller coaster.  The ride goes up and down and higher up and down.  Going up is exciting as you chug chug chug towards the top of the “hill”, you reach the top and for one brief moment you see the whole park and it is exciting… and then, you plunge towards the bottom often screaming for the first few seconds until you reach the calm at the bottom before once again going up the hill.

That describes life - - we are constantly going up and down hills.  Like the roller coaster car we chug chug chug as we try to climb to the top.  We pray that we will get there.  We look around on the way up.  We cough and sputter on the way up but then…. Alas, we get there!  The view from the top of the “hill” is awesome.  We get a glimpse of eternity - - of the things that God has made for use – the sun, the sky, the mountaintop.  That view can be short lived as something happens and plunges us into the valley.  We kick and scream all the way down, sometimes hurtling out of control, not knowing how to make the ride stop.  In that moment did we forget about God?? 

When cancer is in the room, it can feel like the roller coaster is picking up speed.  The hills sometimes feel so tall and insurmountable.  At times the mountain top feelings are all to fleeting as doubt and fear creeps in and send you plummeting towards the bottom once again.  It takes every ounce of faith to make your way to the top. 

There are times I feel as though I have to fight harder to make the normal things happen again.  Recently I had to convince George to make plans with some friends to do something we used to do every year without a second thought.  I know what some of the fears were but probably not all.  I had to justify why we should have this date night.  While George said yes there I times I know he is saying yes to appease me even though his heart is not truly behind it.  In the end we had a great time and he was glad that he went.  

He has been able to create some mountain top moments… Such as face-timing the twins every Sunday night and sending them personal emails every day.  Things such as walking two or three times a week with some buddies of his (a 2-for-1 special as not only does it give him some physical exercise but also gives time to share, vent and talk to his friends).  He cooked Thanksgiving dinner again this year and was able to enjoy the feast that he missed out on last year.  He has done some Christmas shopping and is looking forward to seeing the kids on Christmas day.

Like the merry-go-round, this phase is a repeat of what we went through just 14 months ago.  Fears and doubts cast shadows over George.  While he wants to make the most of his moments, it is sometimes hard to get out of his own head to do so.  He gets frustrated that he gets fatigued so easily.  And while he is looking forward to the holidays, there is a part of him wondering if this will be his last.  That makes me sad to think he goes to “that place” in his mind.  It cannot be easy to be in his head, to struggle every day knowing that cancer is in you.  It is hard for me because I cannot do or say anything in those moments to give him comfort.  I am that gal in the South Pacific show that shouts, “I am a cockeyed optimist” and it is rare for me to go to dark places in my mind.  It is natural for me to be in my “happy zone” as that is how I grew up.  For George, he goes first to the dark places, the worst case scenarios.  Then, if or when things turn out better he feels good.  I am the Yin to George’s Yang. 

It is two months until the next surgery.  With each tick of the clock George feels the weight of this decision, the risks involved.  We both feel that this will give him a good shot at being NED.  The possible results outweigh the risks at this point.  As we come closer to February 5, 2016 we will again reach out to others for prayerful support, for hugs and comfort.  Our prayer warriors come through so faithfully time and again. 

Again, I ask for peace throughout this holiday season.  For time well-spent with loved ones, for love and laughter to fill our houses and our hearts.  I am grateful for those who have stood along-side us for these many months.  I am humbled by the thoughtfulness of neighbors and friends.  I thank God that my faith has carried me through some tough times in my life, that I can feel the presence of God and that I KNOW without a doubt that all will be well. 

                                                

The “C” Word – 1 Year plus 82 days We have a Plan

Today we met with Dr. Bastidas again as he finally had the second opinion from Dr. Lowy in hand.  That aside, though, he really wants to know where George’s head is at.  He said that normally patients come in with their mind already made up about what they want to do.  Then they can give their thoughts for or against what the patients are thinking to make sure that the decision is the right one.

Dr. Bastidas is a “shoot from the hip” sort of person.  He tells it like he is – no sugar-coating.  When George told him about our conversation with Dr. Lowy and the fact that Dr. Lowy uses terms such as “30% cure rate”, he offered up his congenial smile and told us he doesn’t use the word “cure” for cancer…. Ever.  Perhaps because there is always the lingering chance that cancer can recur at any point along the way.  At any rate, he chooses not to use that word. 

George also told him about his question to Dr. Lowy about whether or not the tumors seen could be “left over” from the first surgery rather than recurrence and Dr. Lowy’s response being a thoughtful “hmm, I suppose it could be”.  Dr. Bastidas concurred.  Given that there were a LOT of tumors in the belly and a lot of organs that needed to be removed and/or scraped of visible cells – it is possible that a few of those little buggers escaped notice because they were tucked away. 

So then the question – do you just go in and remove those two tumors?  Or do you open up and do a full on surgery to remove the tumors, take a gander to ensure that there are no other tumors that somehow weren’t seen in a CT scan and do HIPEC again?  Obviously the better choice is the second one.

We asked how long the surgery might go this time.  George was discouraged to hear that it would be 5-6 hours (only about 1 ½ hours shorter than his first one, which was actually short considering all the organs that were removed).  Dr. Bastidas explained the process so we understand why it will take that long.  Basically, he will need to look at any “anchors” that they put in during the last surgery and determine if they have to undo anchors in order to allow the chemo to reach areas that need to be hit again… and some of those anchors may be in places that will require some colon re-sectioning again. That, for George, is the scariest part because he really does not want anything else shortened!  And the recovery time SHOULD be shorter (hospital stay) – but will depend on how much re-sections are done as that affects bodily functions and those need to be working in order for him to be discharged.  It could be as little as 4-5 days – or perhaps 8-9…. Still shorter than 12 (or 16 as was our first time around). 

So we looked at the calendar for 2016.  Dr. Bastidas is gone for a few days at the tail end of January into early February – and gone again from February 12^th for about a week to a conference.  Our tentative surgery date will be Friday, February 5^th at 7:30AM.  With a LOT of prayers we hope to be home before the doctor departs on February 12^th. 

My prayers right now would be for George’s anxiety level to be lowered sufficiently so he can ENJOY the upcoming holidays.  He is in a much better place today than he was a year ago.  He is walking 3 times a week for 2 miles or so each time building up his lung capacity so he can go into this surgery as healthy as he can be.  Not having to work has greatly reduced his stress level – which is good for him (dealing with the insurance companies has been taxing at times but that is starting to become a little bit easier for the time being). 

I pray for some wonderful family times with Thanksgiving and Christmas holidays.  May we enjoy some good belly laughter and joyful banter with the children and grandchildren… and I know we will enjoy good food - - and even some of our daughters are doing some baking for us this year.  THAT is a huge treat!! 

We are thankful that we have insurance to help us pay for the medical procedures required for this cancer treatment.  We are thankful that George did not require any hospital stays in 2015!!  I don’t want to jinx the household by saying anything else right now about that!!

We are thankful for those friends who have invested their time in helping us along the way – for those that walk with us (literally and figuratively), for those who continue to keep us in prayers throughout the journey, for those who give encouraging words, for those that pop in for a visit now and again.  Cancer has changed our way of living, that is for sure! 

We have met via social media many people going through this cancer journey and are mostly encouraged by what we read on the various posts.  We have met another couple going through exactly what we have gone through – their journey is started almost exactly 1 year to the day of ours.  Our friendship is via email and phone calls – but we are happy that we can offer encouraging words to them and repay what has come our way over the past 15 months.  God is Good…. He’s got us covered!! 

The “C” Word – 1 Year plus 82 days- Where do we go from here?

After meeting with the oncologist, George decided that perhaps he should help raise the odds that he could rid his body of the tumors or at least slow them by turning to a meat/dairy/sugar free diet.  We went and purchased some books on this and asked questions of the gal we’d met who had only water balloons instead of cancer-ridden tumors.  We purchased a juicing machine… and we started eating healthy at home.  At first this helped us each lose a couple of pounds and we felt that we were being healthy individuals.  After the first couple of weeks it slowed down a bit but we reintroduced some breads and things which may not help. 

We met with Dr. Bastidas a week after our oncology appointment in hopes that he would have the direction we needed to take now that we knew that cancer had returned. 

What happened surprised us.  He walked in the room and said, “How are you doing?  What do you want to know?”  We said that we hoped he would tell us what is next.   Instead he said, “You have two options.  One is to do another surgery and the other is to watch and wait.”  He then went on to say that there is no data to suggest when to do a second surgery.  He also said since it is a slow growing appendiceal cancer that we certainly could wait and not do anything for the time being. 

He suggested we talk to some other experts for their opinion and have another CT scan in three months rather than six before coming to a decision.

We came away from our appointment a little puzzled, confused – because the one man who always managed to give us hope, though still giving us hope, did not give us any concrete answers.  He did say they would contact Stanford to see if we might get in to see Dr. George Fisher, a well known oncologist who also happens to be a friend of his.  We also decided to seek out Dr. Andrew Lowy, the closest PMP expert to us at the UC San Diego Medical center.

After waiting a few weeks and hearing nothing from Stanford, George decided to give Dr. Lowy’s office a call and was given an appointment for one week later.  We made arrangements to drive down on Monday, Oct. 26^th for a 9AM appointment on the 27^th.  All the paperwork was faxed, emailed and called in for the visit.  We were greeted by his Nurse Manager and the chief resident surgeon who both met with Dr. Lowy before he came in to see us.  After going through the protocol of the visit he asked what we needed from him and we said that we were looking to him for some guidance about what to do next.  He did state that he did not feel that systemic chemotherapy or any other type of cancer treatment needed to be considered as they will do nothing for this type of cancer.  He offered up some statistics that we did not know.  The fact that a second surgery could possibly “cure” George – statistically there is a 30% chance that could happen, especially if the only places visible are the two tumors which may or may not be left over from the initial surgery.  He does not automatically do HIPEC on the recurrent surgeries but would have it available just in case it is needed.  He also stated that if George did absolutely nothing, no surgery, that there was a 50% chance he would live another ten years (50% of the people do not last that long, 50% live longer).  We could also wait for surgery until George was symptomatic, but given that he has never had symptoms, that probably would not work for us. 

We mentioned the fact that we were doing a vegan diet which he poo-pooed stating that there is no scientific evidence that this kind of diet helps cancer patients.  If we don’t really like doing it he said there was no reason to stay with it.  I think we believe otherwise as we have met someone who appears to have been cured – and we have read or seen about others beating the odds – but decided that we might eat meat on occasion but would not keep it at the house, only turn to it if we are out for a meal.  (Everything in moderation….)

On the way back from San Diego we discussed our options and figured that the ball is clearly in our court right now.  George does want to go back for another surgery but is relieved that not having the chemo might be an option.  We can basically choose a date that fits into our calendar knowing there are a few events coming up in the new year that we might need to steer clear of.  While he is not looking forward to another surgery – no one does – he does feel better that even though the odds are low that he can be rid of the cancer for a good part of the future, it is better than have 0% chance.  As is said, “something is better than nothing”. 

We did hear by way of our oncologist that the Stanford expert sees no reason for us to see him.  Supposedly he has sent a note to Dr. Bastidas stating that he does not know of any other clinical trials or know of any other treatments available and that he is deferring to them for judgement.  We were a little bit put off by how this was handled by Stanford – like we are not “good enough” to be seen by him.  Honestly, though, I always figured that Dr. Lowy’s opinion would carry far more weight than Dr. Fischer so though we are disappointed in not getting an appointment with him, we have more confidence in Dr. Lowy. 

In the meantime we are continuing to stock lots of fruits and vegetables in the house.  George likes going to the Farmer’s Market near us on the weekend to stock up on organic produce.  We spend the week making salads and juicing and cooking from scratch (when cooking is done anyway).  A friend let us have a lot of tomatoes and I made homemade pasta sauce.  I have also made applesauce to add to our oatmeal as a sweetener or to add to other things. 

George has been home on disability for a few weeks now and even though he is not working he gets tired very easily.  His recent bloodwork did not show any anemia so we are a little puzzled as to why he is tired so much.  Much of the first few weeks of disability was spent getting insurance going and on track as well as working through getting next year’s health insurance benefits in place. 

On the “plus” side is the fact that we have an evening caregiver back in place for Mom so I no longer have to work all day and spend evenings caring for her (during the work week).  Weekends are still up to me to take care of her.  During the week I get to relax and spend time with George again.  He likes that !!  J  

The “C” Word – 1 year 2 days Post Op- Timing is of the Essence

We really like our surgeon, Dr. Bastidas.  Our visits to him normally put our mind at ease.  He knows his stuff.  He can explain it really well.  He has a plan.

Not so today.  Not exactly.  Presented with the findings of the CT scan he tells us we have two options.  The first is to wait it out and see how slow growing the tumors are (indications are that these will grow very slowly).  The second being to do another surgery.  He explains the pros and/or cons of both.  Certainly any surgery brings its’ own set of risks.  You have to weigh the risk versus reward factor.  Yet getting rid of residual cells at an early stage certainly would feel better.  The problem we will have is trying to plan surgery before it is invasive of any other organs. 

George tried to pin him into a “favored” opinion, asking him, “If this were your favorite brother, what would you tell him?”  He replied, “I would let it be his decision.” 

To help us make an educated decision, he suggested we get the opinion of other experts in the disease.  The closest oncologist is Dr. George Fisher at Stanford. Dr. Fisher treated celebrities such as Steve Jobs and Patrick Swayze.  When the press found out about Patrick Swayze, he was bombarded with people wanting to be treated by him.  He ended up “closing” his practice except for patients referred by other doctors. Dr. Fisher is a personal friend of Dr. Bastidas as they set up the cancer center at the Palo Alto facility.  After seeing Dr. Fisher, we may send the records down to San Diego where the closest PMP surgeon practices at UCSD, a Dr. Lowy and his group.  That means taking a couple of days off to head down that direction to get his opinion.  These are pending referral requests from Dr. Bastidas so we will wait to hear from them. 

The second opinions, coupled with another CT scan to take place in January to see if there is any further progression of disease, will enable us to make the best decision as to when another surgery will take place or at least narrow down the time frame.  On the “plus” side is the fact that the next surgery should not be as difficult as the last one.  With any luck there won’t be any full organs removed though it is possible that a short bowel resection is possible.  Some more scraping, and more HIPEC (heated intravenous peritoneal chemotherapy) like the last time.  Overall, it should be shorter with a shorter hospitalization. 

This is the first time we left Dr. Bastidas’ office not feeling much better than when we went in.  Slightly better, but no firm plan in place just yet. No firm decision about where to go from here. 

In the meantime, George is going to file for short term disability in order to concentrate more on his personal well-being.  Physically he tires readily and though he has been back to work for eight months, it exhausts him.  Workplace morale is also fairly low and that factors into his mental and emotional well-being.  By taking work out of the picture, he will be more able to handle his health in all aspects.  He has decided to attempt to eat much healthier, cutting out much meat and eating mostly fruits and vegetables.  He has read that a vegetarian diet does help cut down cancer cells/growth.  He will have plenty of time to explore his options about healthy eating habits and make some changes.  As he says, “I have a choice here.  If eating vegetarian helps prolong my life, I will have to do it.” 

Today we also had a chance to meet up with another “walking miracle”, a friend of our who has seen more hospital time over the past 20 months.  In early 2014 he was in the hospital and/or rehab for about 3 months with heart issues and the like.  While we were at Good Sam hospital, he was also there for a few days so we got to visit with him there.  He recently underwent a very long brain surgery.  Today, we visited with him at the store that he and his wife owns.  Though there are some memory and speech issues, the fact that he is up and about and able to do sales and help out at the store is a HUGE forward step given that his surgery was within the past few months.  Two miracles between two friends.  A special bond has formed between them.  We give thanks that both George and Rob and alive – that they both have fighting spirits – and that they still have plenty of reasons to smile and laugh in spite of what they have experienced. 

 Note:  I get notes from a Facebook page called "The Whisper of God".  Yesterday and today the prayer and message were SPOT ON for what we need to hear.  Todays read:

Thought for the Day - October 2, 2015

“When we need His help, God does answer our prayers. However, He answers in His way not ours. Be patient as it may take some time for Him to work all things together to answer your prayers. Be aware because sometimes His answer comes in the least expected ways and you don’t want to miss it.”

I hope you have a miraculous day today my friends! – Elmer Laydon

“This is what the Lord, the God of your father David, says: I have heard your prayer and seen your tears; I will heal you.” (2 Kings 20:5 NIV)

So, even though we did not hear what we wanted to hear today, it is God's way of saying, "Not yet, my son."  He has a plan, we will wait to hear it!

The “C” Word – 1 Year Post Surgery... The future

The one thing that all cancer patients long for is to hear the words, “You are cancer free.”  This provides the ultimate sigh of relief that the worst is past.  With the weight lifted you can begin living again.  That doesn’t mean that the worry goes away.  It will perhaps always linger for being told you have cancer in the first place is a life-changing deal.

We had hoped that we would be able to say that today George is having his “one-year cancer free” anniversary.  But, that is not in the cards for us for, indeed, the “C” word has once again resumed residence in his belly.  To say we are disappointed would be an understatement.  To say that we are doing “okay” is close to truth but in reality the dark cloud has taken up a post over George.  He tries to not show this but as his spouse I know it is there, lurking, whispering to him.  It definitely has an impact on his overall fatigue, emotionally, mentally and physically. 

If we choose to look on the bright side we can do some comparisons about where he was then – and where he is now.

One year ago George was undergoing the “Mother of All Surgeries (MOAS)” while I spent the day in a waiting room.  A year ago during the surgery George went into shock (something I think the doctor should have shared with me right afterwards instead of finding out weeks later).  This deeply affected his recovery I think.  A year ago my dear George came out of surgery looking like an advertisement for the Michelin Tire man, his entire body grossly swollen with fluids pumped in him during the long surgery.  A year ago he was incapacitated by the surgery, barely able to talk, unable to walk, incapable of eating.

TODAY…. His voice is back (albeit a little weak at times), his appetite is fairly normal, he can get up and walk around (maybe not fast and maybe not for long periods of time, but he can walk).  He has made progress… small, steady, slow progress most of the time. His energy level is low but at times if he keeps a steady pace he can accomplish a lot.  It is frustrating for him to feel “weak”, to not have the stamina he had before.  But if he stops and looks back at where he’s come, especially during the January to June time frame, he feels better and can tell the difference. 

But what about tomorrow?  What will tomorrow bring?  One of the questions I ask myself is “How does one move forward knowing that they have something growing inside of them?”  It’s not like this is a baby with an anticipated birth with the reward being a bouncing baby boy or girl.  No, this is something nasty that is trying to permeate the cells.  Something no one wants inside of them.  It’s easy for me to say, “Be positive… Don’t worry so much… Remember it IS slow growing… Try to make the most out of every day…”  But it is not my body that this is happening to.  While I have to live with it because it affects me as the spouse, I don’t have to live WITH it in my body.  It’s easy to lose sight of the difference sometimes. 

With the radiologist seeing visible growth in the span of six months, it is easy to become alarmed.  There are “low density objects” seen in the scan which could be possible recurrence.  There are a few other thing which could indicate neoplastic disease (i.e. cancer).  What we need to keep an eye on is the size of the growths.  They currently are very small – less than pea sized.  Except for one that is larger.  When does the surgeon determine it is time for a repeat surgery??  How big or how plentiful does the disease need to be?  Will we have surgery soon - - or is it still a year or two or more away?  We certainly don’t want to wait until it reaches the point that we were at last year where a gallon or more of the tumorous gels were removed.  I am sure the surgeon will address this issue when we see him in two days.  Since disease has already taken up residence, it looks like our future holds more very “watchful waiting” periods, even if we have another MOAS. Does this mean we will have scans more frequently? 

Will there be a time that we can truly enjoy our lives?  When we can just go out and at least pretend that nothing is wrong?  Is that possible with a diagnosis such as ours.  We do have to make time for joyful happenings – because it is good to love and laugh and just be silly.  There is so much more to life than this “C” thing.  One of my biggest fears is that this “C” thing will overtake our lives, leaving little room to truly enjoy living. 

On this, the 365^th day post-surgery, we broach the future with baited breath.  Waiting for the next move.  (There’s that word again… “waiting”.)  The Lord asks us to be “patient”.  That word is sometimes over-rated in my book.  I am a person that exercises a lot of patience…. But chronic disease truly tests once patience… And so I am to be tested again.  Will I do better this time around?  I certainly learned some lessons along the way the last time.  There are things I know I will do differently going down this journey, mistakes I made along the way. 

In the wee dark hours of the early morning, when we have both had some sleep yet not enough, we reach out to one another.  I remember this happening before while we were awaiting news from tests and doctors in the weeks leading up to the first surgery.  Whenever George’s hand held mine I could feel him drawing my strength into his body, needing to know that I was still there by his side.  It is happening again.  In the darkness of the morning, as I hold his hand or wrap my arms around him to reassure him I am still and always will be here, I feel very vulnerable.  The shadows of the night cast clouds of worry about the room.  My mind wanders and I am transported to all those mornings last year when we had so many questions and so much fear about where this road would take us, wondering if George would make it through surgery.  And all those days, weeks and months afterward as he struggled through his recovery.  Tears fall silently on my pillow as the reality of what is unfolding sinks in. 

And George, my beloved George, it pains me to watch this happening to him.  Probably as much as it pains him to watch his mom go down the Alzheimer’s road.  While there are things you can do to make the person more comfortable, you are helpless to stop the pain, to stop what you know is inevitable.  All you can do is love them where they are in the present, support them in whatever way is possible.  It may not seem like much – but it does mean the world to them.  It’s at times like this that you realize that personal connections, giving of yourself, being present in the moment is one of the best gifts you can give to someone. 

The most important thing, though, is to continue in faith, to believe that with God all things are possible.  We have never lost our faith in the midst of this trial.  We have faith that God will get us through wherever this journey takes us, no matter what the outcome.  We pray for more miracles as we did throughout the first “go-round”.  We are, once again, thankful for the circle of prayer warriors who will be working with us.  “It takes a village” – to pray, to be there for us, to send notes of encouragement.  We cannot do this alone.  We CAN do it with the help of our friends, our family, the doctors and nurses we come into contact with.  Thank you, God, for placing people in our path through not only the past year but in the days, weeks, months and years to come. 

God be with us as we see the surgeon on Friday to determine what the next step is and what that entails. 

The “C” Word – 1 Year plus 46 days - Oncology update

The anticipated day finally arrived.  With some trepidation we entered Dr. Sheh’s office.  Of course, this is not the office we are used to going to, just ¾ a mile away.  No, South Bay Oncology was purchased by Stanford and moved to a brand new building over near Good Samaritan where we had the surgery done. It’s not a bad location – just different. It’s a more sterile environment.  The walls of the exam room had no pictures, just a ticking clock on the wall.  Most doctor offices do not have clocks because it only serves to make patients more anxious listening to the tick, tick, tick, especially if the doctor is running late.  We also were not checked in by Dr. Sheh’s normal bubbly assistant, Jordan.  Jordan always greeted us with a smile and made small talk as she got George’s vitals.  Today, the assistant was very hard to get to be personable.  Also, at this new office the patients are given a little “tag” to where which indicates where they are in the facility.  The doctors also wear one.  Guess they want to know where you are at all times!  While Stanford Hospital has a good reputation, it is just another “big business” that charges more bucks for the same services we were getting before.  It does not necessarily mean better patient care.  (We found that out when George’s mom was in the hospital at Stanford last winter.)  Anyway, it will take time to get used to this new place. 

And, yes, get used to it we must.  Unfortunately…. For the latest CT scan shows signs of recurrent disease.  For now, it is relatively small – and not much to worry about – seemingly, anyway.  There is one area that is growing more visibly so Dr. Sheh would like us to do a follow up appointment with Dr. Bastidas to get his take on what should be done.  He may say that we will continue to watch and wait – or maybe he will want to do some surgery to remove something.  We don’t know.  That answer will be forthcoming in one week when we visit his office. 

We are not entirely surprised that there is recurrence…. Just disappointed that there is obvious new “growth” in areas where previously there was none.  We had hoped for No Evidence of Disease (NED), but that is not in our deck of cards. 

On the “good” side, George’s labs were all pretty good.  Some are still a little off but are getting closer to normal as time goes on.  Although it has been almost a year, the body is still making adjustments.  Also done this time around was an immunology panel.  The doctor did not appear to feel that there was anything to worry about in that area, so that is good. 

Other things we discussed today were George’s lack of stamina.  Although he has made a lot of progress over the year, he is still far from where he was pre-surgery.  And that may never come back.  That is the most frustrating thing for George to deal with.

Outside of the doctor’s office we also discussed the memory “hiccups” that George has.  He was telling me the other day about a comment his boss made that surprised him.  I won’t go into details as that information is confidential, but I remarked to George that he had made a comment to his boss about this topic back in the spring.  Not only that, but we had another conversation at a later date where I told George that he had made a comment to his boss in that regard.  George does not remember either conversation.  I said to George, “I find it hard to believe that this type of memory loss is only apparent at home, it has got to be happening at work as well.”  He said that yes, it has happened at work as well.  That is worrisome.  At home it is one thing, at work quite another. 

Where does all of that leave us?  Well, #1 we have to wait and see what the surgeons’ viewpoint is on the CT scan findings.  #2 we will start exploring George’s options about continuing to work, working part time, or retiring.  Obviously these are both things that require considerable deliberation. 

But it also leaves us “on hold” for one more week as we await our appointment with Dr. Bastidas.  Ugh!  There is nothing worse than waiting!!  

The “C” Word – 1 Year plus 40 days Waiting - - again

A few things to catch up on.  First, we saw our wonderful surgeon, Dr. Bastidas, in mid-August.  Though George spoke of a few concerns, Dr. Bastidas did not appear to be concerned.  The only thing he was concerned about was the fact that after this length of time George is still not having normal bowels and that he was having to go too frequently.  He said, “I left you with enough large intestine, I don’t know why you are having issues.”  As a result, he did add back in a medication (Lomotil) that George can take in addition to the Immodium.  So George’s regime is now to take 4 Immodium & Lomitil daily.  The results were almost immediate in the less frequency of bathroom trips during the day.  Not perfect, but better.

The past few weeks have been eventful in other ways.  We did take our scheduled vacation to see the Grand Canyon and Bryce Canyon, neither of which George had seen before.  I have seen them on a couple of occasions while growing up, the most recent of which occurred when I was 21.  That particular time was when my parents were moving me from Connecticut to San Jose.  We camped as we traversed the country and made stops at Arches, Bryce, Zion, Grand Canyon, etc.  George always laughed when I told him my take on this trip as a 21-year old was this:  “Bryce = Red Rocks down, Zion = Grey and White Rocks up, Grand Canyon = More rocks, big whoop (not)”.  I must also say that the trip was taken in June, the first hot month of summer for those parts!  As an adult I can now the grandeur a bit more.

Needless to say, George was thoroughly impressed.  We saw the Grand Canyon in the morning and afternoon light.  We did not catch a sunset as it was monsoon season and every afternoon it rained (especially the second day we were there).  We did, however, see a couple of rainbows because of the rain.  That was pretty cool!  He took a ton of photographs!  Bryce was spectacular as well with a different kind of view than the Grand Canyon. 

On the way home we stopped in Las Vegas and stayed in a luxurious room at the MGM Grand.  Then we headed up to Roseville to spend a couple of days with the kids and grandkids.  We had a wonderful, relaxing vacation – long overdue for the two of us. 

During this trip we had a couple of long driving days.  George had built himself a portable potty (constructed from a 5 gallon paint bucket with a real toilet seat attached).  I had purchased a small pop up tent to sit in should the use of the potty become necessary.  Jokingly dubbed the “crap-o-let”, this invention never left the car!  George did confess later that there were a few times he was uncomfortable but did not let me know because he wanted me to enjoy the time away from home.  Such a guy!!  LOL!

Immediately upon returning home our lives were once again consumed by caring for George’s mom.  Her evening caregiver now gone, we were thrust into picking her up from daycare and taking care of her until bedtime.  This time around, however, George is going to fix dinner for us while I care for his mom.  (Otherwise our dinner would not be ready until 5:30-6 PM which is too late for us.)  This definitely helps me not feel so overwhelmed with having to take care of everyone! 

And now…. Here we are, waiting for results… again.  George’s 2^nd CT scan was yesterday.  That was the “easy” part.  Now we wait until our scheduled oncology appointment which is next Friday.  As expected, George’s anxiety level is slowly on the rise.  Convinced that, because there were some areas of differential diagnosis during the initial baseline scan in March, the cancer is back.  The differential diagnosis means that because of his history they cannot rule out that it might possibly be a recurrence, but it also might not be a recurrence.  And so….. We wait.  The end of the week cannot come soon enough so we can deal with whatever we are told.  We have requested prayers far and wide to ask for peace of mind, for NED (No Evidence of Disease), for strength.  Once again, we don’t know what God’s answer will be.  In some ways, I think we are preparing for the inevitable – for the return of the “C” word.  Knowing there are areas of “concern” we can’t help but think that one or more of those are the start of additional tumors.  We are comforted, if that is what it can be called, that PMP is a slow growing cancer so even if it has returned it could be years before we have to think about another surgery.  But even another surgery down the road is not exactly something that we would look forward to as this past round was extremely difficult. 

But…. We will deal with whatever is put in front of us.  We are a team.  Our family and friends and neighbors are all part of that team. 

For now, until Friday… we will wait…. And pray…  

The “C” Word – Day 365 First Anniversary of “D” Day

One year ago today was “D” (diagnosis) day for George in the emergency room to see about a kidney stone.  One year ago – wow, amazed in the transformation that has occurred over the past twelve months.  Over the past twelve months we have run the gamut of emotions – fear, anxiety, dread, anger, frustration, elation, relief, hope and so on.  We have answered to those emotions with bargaining, denial, gusto, acceptance, etc.  We have contemplated death and contemplated life.  We have cried tears of despondence and tears of joy.  We have spent hours in doctor’s offices and hours enjoying our beautiful back yard.  Our outlook on life today is different than it was one year ago. 

While the first six months after diagnosis were all consumed with dealing with the diagnosis, the seeking of and treatment of the cancer and trying to find comfort after surgery, these past six months have seen life just beginning to shape into some semblance of “normalcy”, albeit it a new kind of normal. 

As a caregiver I have had to do things I don’t like to do but had to be done including treating/changing dressings on open stitches, inspecting bulbs of body fluids draining, and nagging my husband to do things he would at times have preferred not to do (breathing exercises, eat, walk).  I have had to push and advocate in the hospital to get things done.  There were times I had to just sit and watch my husband suffer in pain knowing there was nothing I could do to help him.  That was (and is) perhaps the hardest part of it all.

George has good days and bad days still… but the good days usually outnumber the bad ones.  Over the course of these past few months he has been following some dietary suggestions from his general practitioner and they appear to be working to some degree.  While there is always room for improvement, this particular “normal” is much better than where things were four, six and eight months ago.  Others who have had the MOAS agree that it is nearly impossible for the digestive system to go back to the way it was pre-surgery.  They will all tell you that they have learned to accept and live with whatever their system does, because it is better than the alternative of not having surgery.

In the past six months we have been actively part of a Facebook page for PMP patients and/or caregivers as well as a PMP online group that allows people to post questions, tell their story, etc.  We have seen success stories - - and we have seen others not make it through.  We recently made acquaintance with a young lady from the bay area who was diagnosed with PMP nine years ago.  While her outcome proved to be far different from expected (no cancer found), we were able to provide emotional support and advice for some of the side effects of the surgery.  We also are hoping to be a success story but that part of our journey has yet to be revealed to us. 

The biggest lesson George has learned along the way (thus far), is the importance of relationships (something I already knew, by the way).  George pointed this out in his Father’s Day Sermon that he gave at church in June.  (https://www.youtube.com/watch?v=yk7zb_82AL4)  He relates what he calls the Power of Prayer and the Power of Faith as well and how this experience has transformed him.  Anyone who has been through an ordeal with any cancer will probably tell you the same thing.  They may also tell you how they connect with others who have or are struggled with a cancer diagnosis.  It is something that bonds them together. 

While George’s stamina is better than it was in prior months he still tires easily.  He can tinker in the garage for hours one day, and the next succumb to sitting and relaxing.  For him this is extremely frustrating.  After ten months he is tired of being tired.  He longs for his old self that was actively busy all weekend and easily could knock out projects in short order.  Now, it seems to take him much longer to accomplish projects.  There are still gaps in his memory of the order in which things occurred.  Sometimes he says or does something out of character for him – and I have given to calling these moments “chemo brain” although we don’t know if that or the long time under anesthesia are actually the cause of them. 

In the next four to six weeks we hope to find out how things are shaping up.  We have planned visits with the surgeon and oncologist and will have the second CT scan since surgery.  This CT scan is important as it will paint a clearer picture of the three “suspect” areas discovered during the baseline scan.  If they are unchanged, that is good news.  It may mean there is scar tissue. If there is evidence of change, this will mean that the cancer has already returned.  We pray for the first scenario. 

We have a short vacation planned for September.  I informed George that I do not want to get any test results prior to leaving.  We both deserve some time off together without the worry of cancer.  It has been two years since our last vacation and that one ended up not being very relaxing.  It’s probably been three years since we had a good vacation.  I just hope that Arizona and Utah are not insufferably hot while we are there!

We don’t yet know what the future holds in relation to this “C” word.  All we know is that we have to take things one day at a time.  We have to keep praying not only for ourselves but for others going through difficult times.  We know his particular cancer has a high probability of recurring.  My hope is that we will be able to “shelve” our thoughts on this in order to go out and live.  Live life to its’ fullest.  We know God has a plan for George.  The only thing we don’t know for George, or for anyone for that matter, is how long God will give us to carry out the plan.

I will post updates on the outcome of our visits at the end of September which will actually be the one year anniversary of George’s surgery.  By then we will have had all of our appointments and our scan and will be able to report on those for anyone keeping tabs on progress. 

Lastly, we want to take time to give thanks.  Thanks to our children for being there for us, loving and supporting us, stepping in to do things we couldn’t do at times.  We thank George’s sister, Rosemary, for being available when we’ve needed her to take care of mom – and for spending countless hours just sitting and talking to George and being a shoulder to lean on.  We thank our neighbors for some delicious meals, for taking time to pop by and check in on us.  We thank the multitudes of friends and family members who have prayed, visited, called, or sent notes or cards as that helped see us through some particularly dark moments.  We thank all those who, via the power of the internet, been called upon to be prayer warriors – some people from the far corners of the world.  We thank the good Lord for the opportunity to have more time together.  We continue to need this support, the prayers, and the friendships as we go forward.  There are not enough words to express how thankful we are for everyone.  May God be a blessing in your lives. 

The “C” Word – Day 306 (6-21-15) Happy Father’s Day

Today we got to experience something we were not sure we would have been able to 10 months ago – Father’s Day.  Ten months ago things were looking so grim we didn’t know if George would be here for this…. But… not only is he here, he is starting to be more “alive” and is looking toward the future.

As a testimonial to the Power of Prayer (POP) and Power of Faith (POF), George was the guest “preacher” at church today.  A while back he had told Pastor Rod that he wanted to do so.  He needed to wait until he could be a little less emotional about all that has happened.  He probably would have gone a little bit longer but Pastor is retiring in a week so it was going to be now or never.  On one level he is less emotional about the effect this has had on him, but deep inside the emotions are always there and ready to surface at a moment’s notice.  Some things are just not in our control.

I was able to round up the three daughters, a son-in-law and, of course, the grandkids – It was important to us that family be there for this special sermon.  I was glad that a few of his closest friends made it as well: Steve and Robyn, Cathy and John. 

He spent the past two months or so drawing up his outline, trying to figure out which points he would like to cover.  This was going to be a somewhat educational talk about appendix cancer as well as a few miracles that happened because of POP and POF.  He did a good job with his sermon today.  . . . Despite the fact that I was tearing up before he even took to the pulpit.  That didn’t help … but I couldn’t help it.  It’s just who I am.  I get very emotional when I remember not only the hard times but the times pure faith, the moments of relief, of joy, etc.  All of those together are very emotional for me. 

George was able to make a few jokes – even ad libbing about calling up “Mr. Google” and “Mr. Yahoo” in order to find out more about this cancer.  He took us on a roller coaster ride of ups and downs, laughter and tears, during his 25 minutes or so of speaking.  Yes, some of the jokes were at my expense – especially when he spoke of me trying to get him to eat – eat – eat!  Among the “miracles” due to prayer were the fact that we found a surgeon close to home, that the surgery was given the “go” signal and that surgery was shorter than expected, that he was able to climb stairs before going home, and the biggest miracle of all was the sudden return of his taste buds. 

For lunch today a catered meal from Buca di Beppo (Italian food) was on the agenda.  It was perfect!  No cooking for the guys on Father’s Day (and also none for me either) – and easy clean up as well.  So we got to sit, eat, relax and visit for few hours before the kids all went home.  Addy and Bella got to play in the little pool and get some energy out before their ride home as well. 

Later in the day at home he asked what he did right and what he could have done better with.  I told him that he did pretty well.  Aside from a few facts that were incorrect, things only I would know because I remember, he got the point across at how this played out and how effectual the prayers were.  Of course, this led to a discussion about how the facts were wrong and it took me awhile to convince him that I was right!  (He could always go back and read this blog to confirm it!)  He said he left out a few things – some intentional, some not.  He was going to talk about why this was hard to tell his daughters – but some of the girls are in difficult places right now so he decided to omit this today.  A few other things he either forgot to speak to or decided he was running out of time so he would just have to table them for this particular sermon.

All in all, it was a good day.  George says it was one of the best Father’s Days he has ever had.  Mostly because he got to see all the girls in the same day and that doesn’t happen very often.  The fact that they were at church with him while he gave his sermon – priceless to him. 

So, we give glory to God that George is continuing to get stronger.  He is “tinkering” more in the garage.  While I was on my glorious vacation, he put up some spotlights in the garden and started to do some bathroom remodeling, including painting it and rebuilding the shelves.  He is looking forward to some vacation time when the twins are here to attend VBS week at church.  He is starting to figure out what he wants to do when he retires from his job (a time still to be determined).  At this point in time we are looking toward a future - - and that is a beautiful thing!

The “C” Word – Day 271 Settling down and relaxing

We were very fortunate that the shingles ended fairly quickly.  The sores healed up within about 10 days.  George’s face is still tender so he cannot yet use his CPAP machine, but he has been managing okay in spite of that.  The only weird thing we encountered was when the MD asked if we had told the oncologist.  We were puzzled by this but did what he asked and scheduled a follow up with the oncologist along with lab work.  All involved were curious that George had a second outbreak of shingles (his first one being about 30 years ago) and more puzzled still that it was in a different location.  Apparently if you have a second outbreak it should be in the same location as the first one.  The oncologist suggested that the regular doctor do an immunological test whenever the next labs are ordered up.

An evening caregiver is now in place and after having to stay home at night because of the shingles, we are now able to get out and about for a little bit in the evenings during the week.  How nice it is to be able to come home and just make dinner and relax for the evening.  A welcome respite for me, indeed. 

I had my own health issues in recent weeks having to do with intestinal tract stuff.  So far it appears to be nothing serious - - and could actually be that my diet needs to be the exact opposite of George’s.  Mine being high fiber and his being low fiber.  I have to figure out how to “marry” these two needs and come up with a plan that satisfies both without too much extra work.  Guess I have to go back to planning out meals accordingly. 

This weekend George has resumed going out “man land” and doing some small wood working projects.  We found out yesterday that his favorite store to find good wood is closing at the end of June.  Not a happy day for him!  It is good to see him absorbed in his hobby – time certainly flies by more quickly for him when he is busy doing what he loves. I have had to go out and remind him that it is time to eat or time to come in for the night! 

And me, I get to go on vacation at the end of this week.  Much deserved and much needed time off from all responsibilities for 9 days.  I will be travelling “home” which for me is Connecticut, and visiting family and friends during my stay.  It has been nearly two years since I have had a vacation and, while I will not be able to replicate all the plans I had for last fall, I will be seeing a handful of them.  I look forward to these little reunions and visits very much.  I am sure the time will quickly fly by.  I so look forward to being able to relax and just enjoy having only me to take care of - - and come back home rejuvenated after a very stressful nine months. 

The “C” Word – Day 240 New complications

A few days ago George had a headache.  He woke in the morning and I noticed that his face looked sort of splotchy.  He also complained that his cheek hurt.  He stayed home from work yesterday because he just felt bad.

When I woke up this morning I noticed that his CPAP unit was off – he had taken it off because it was irritating his cheek.  He was concerned that he might have a sinus infection, ear infection or something with his teeth.  I told him he should call a doctor. 

By mid-morning I spoke with him again and he was still concerned.  I had to remind him that, since he has no spleen, he really needs to be proactive in his health care and make the phone call.  I figured it would be easier to get in to see his doctor than his dentist.  So he called and got an appointment.

I got a call from him after his appointment – the diagnosis is shingles.  He was so upset with that.  To top that off, the nurse said that because there was a lesion on his nose, that indicated that there could also be shingles on his optic nerve and he needed to see an ophthalmologist right away (tomorrow) to get drops to take care of that.  If he doesn’t do that he could lose some vision. 

Geesh, this is so frustrating.  Sometimes I feel like we cannot catch a break.  We have gone over two months “tethered” to the house because there is no evening caregiver for mom.  And next week a caregiver starts, but George could be down and out with the shingles.  It is in the early stages and it may take weeks to peak – but without a spleen to help fight off infection, this could be a very different bout than his previous one (more than 20 years ago). 

One step forward, one step back…. This is so hard on George.  He actually filled the prescription for pain meds (even though we have some on hand from surgery), because he remembers how painful shingles can be.  He doesn’t like to take pain meds, but he is preparing for the worst. 

The “C” Word – Day 235 Baseline Scan and Oncology follow up

On March 13th George had his first baseline CT scan.  This was preceded by a lot of varying emotions as can be expected.  Every blood test, every scan raises the anxiety level when the Big C is in the picture.

We had assumed that if there was contrast to be used it would be administered during the scan.  However, the day before the procedure we received a call that we needed to go to the hospital and pick up the contrast.  They left the message on the house phone, of course, so we did not get the message until 4PM.  George was pretty disgruntled when he heard about this.  He ran over to the hospital to pick it up… and to make matters worse found he had to drink the first bottle 4 hours before the scan - - which in our case meant 4AM!!  The second one was to be consumed at 7AM.  He did note that having this “glitch” helped some.  It made him more angry and less anxious!  Sort of a trade off!

The surgeon had said that we would probably not hear from him after the scan. He also said that he expected that the radiologist would see “stuff” as there would be scar tissue and areas that are still healing.  He noted that any questionable areas would be the areas we would watch for on future scans to determine if they are worrisome or not.  We had a follow up oncology appointment scheduled for a few weeks later and figured that if anything looked really bad we would find out then.

A week or two after the procedure I happened to log on to the hospital portal site and found that the radiology report was showing.  There are good things and bad when you can read reports online without the direction of the doctor.  On the good side you can see how things were done, maybe find things the doctor left out of his verbal report (as we discovered after reading the surgery procedures from last fall).  On the bad side you can over-interpret things and fall prey to fear with the verbiage.

In this case, there was cause for disappointment.  While we pray for NED, we saw that there are a few areas of “concern”.  These may or may not be reoccurrence of disease but for now we will not know that answer.  This is what we read:

1.  New or developing density at the tail of pancreas is identified. Recurrent disease is a differential possibility.
2.  There is nodular density identified just to the right of midline and superior to the prostate measuring 3.8 x 1.8 cm and previously measured 3.3 x 1.6 cm.  This may also reflect area of focal disease.
3.  Ill-defined density around the distal stomach is identified which is difficult to measure.  There may be additional disease in this region.  Follow up imaging may be helpful.
George looked up the phrase “differential possibility”.  According to Wikipedia the definition is: “In medicine, a differential diagnosis is the distinguishing of a particular disease or condition from others that present similar symptoms. Differential diagnostic procedures are used by physicians and other trained medical professionals to diagnose the specific disease in a patient, or, at least, to eliminate any imminently life-threatening conditions. Often each individual option of a possible disease is called a differential diagnosis (for example, bronchitis could be a differential diagnosis in the evaluation of a cough that ends up with a final diagnosis of common cold).”

What it basically means is that there are several reasons why this area shows up and they cannot rule out that it is possibly a recurrence of cancer.  I think to be safe they have to include this in the report as it basically covers their butts so one cannot go back and say “why didn’t you see this before now?”  After reading this, George’s mind was somewhat eased but not entirely.

Since we would not be seeing the surgeon for another 5 months, I asked the oncologist to speak with Dr. Bastidas regarding these three concerns so that he would be able to speak to us about them at our appointment.  This he did.  And, honestly, he did not really tell us anything that we did not already know.  It is likely that these are scar tissue formations but we will not really know until future scans are done.   

Prior to seeing the oncologist, George accompanied me to my endocrinologist doctor appointment.  I was having a thyroid ultrasound scan (routine) and thought he might like to see how that is done and what the doctor looks for.  I have two nodules on my thyroid that the doctor keeps an eye on (they were tested benign a few years back). There is apparently a third one now to keep an eye on.  The doctor is quite knowledgeable and talks in a patient friendly manner.  He knows of the oncology office that we go to and is aware that they have been purchased by Stanford.  He indicated that he is surprised that they use the LabCorp for testing and not a Stanford lab as Stanford charges more and receives more money from insurance.  Given that, we were not entirely surprised when, as we made our follow up appointment with the oncologist, we found out that the offices are moving to a new building, Stanford Cancer Center, and they will have their own lab onsite at that facility.  As patients, though, we can request to continue to use a different commercial laboratory.  Just another twist and turn as our oncologist went from being private practice to being swallowed up by Stanford.

So, our first baseline scan is done and out of the way.  While it is not exactly as we had hoped, it appears that at least for the time being we should not worry too much. The scan in September will enable us to know more about where we are at than this one did.  That being said, I think we should plan to go away on our fall vacation before we get the results back from the scan.  In that manner, we can enjoy the time off and just relax!

Health-wise George is doing well.  He has now been back to work a full two months.  Stamina is still low (per pre-surgery activity) but he is venturing out into the garage making some small wood turned projects.  We have been able to get out of town about once every 6-8 weeks just for the night, having attended my nephew’s wedding in Carmel Valley last week.  Because there is no evening caregiver for his mom right now, with rare exception we are tethered to the house 7 nights a week and have been so for about 2 months now.  We are hopeful that a new caregiver will start in about 10 days so we can relax and enjoy life a little more and get out to visit friends once again.

The next five months or so we should be “doctor free” which is nice to know.  We do both need to get in for a regular office visit with our regular doctors but aside from that there will be no cancer appointments!  Yippee!!  That in and of itself is a relief as we have had more than our share for the past eight months!  Looking forward to things calming down a bit so we can relax and enjoy things more – family time, friend time, etc.  We are grateful to have crossed a major hurdle (thanks to many, many prayers from people around the globe) and we pray for continued recovery and healing.