The “C” Word 1 year plus 176 days Standing Tall

The past few weeks have been a whirlwind of activities.  Starting with a visit to a new surgeon for a second opinion.  Dr. R as he is called (his name is very long, Rustamzadeh) who, after a brief review of the CT and other scans, basically confirmed the surgery that was necessary BUT who said it would take about 4 hours total.  Oh my gosh – that was less than half the time of the VMC surgeon.  He also said the hospital stay would be just a few days.  Interestingly he said that the CTO brace should never have been an option as the bones would not have fused by themselves with George’s bone disorder. He said if we had seen him after fairly soon after the fall he would only have needed to do surgery from the back of the neck, not the front and the back. Hindsight being 20/20, we probably should have sought out a second opinion right after the hospital discharge in December.  But we did not know that George had this disorder and we also hoped to be able to avoid a surgery altogether.

Once we received the second opinion the whirlwind of pre-op activity took place.  First stop was a cardiologist to get “cardiac release” that George’s heart would not have any issues.  Right after that was an echocardiogram which was interesting to do with the brace on.  All of that went well and surgery was scheduled for February 19^th.  The week of surgery we needed to have labs and a chest xray.  The night before we had to do a special preparation including full shower and special scrub to begin the “disinfecting” process.

Surgery day we awoke at 4:30AM, got up and dressed and to the hospital by 5:30AM.  Surgery was at 7:30AM and I was able to stay with George until they wheeled him into the operating room.  Then, the long wait began.  Although 4 hours was the estimated time, that came and went.  We constantly watched the status on the wall which said “8589 Surgery/procedure in progress”.  Wait…. Wait… Nothing changed until about 1:45 when it said, “Closing”.  Keith and I “high-fived” each other!  The end was near!  About 25 minutes later it changed to “Finished”.  Another high five!  Shortly after that the surgeon came down and let us know that it went very well.  He showed us an xray of the “after” affect and it was amazing.  He actually straightened George’s neck to an upright position. So he may actually be back to the height he thought he was (a few months back when they measure him he was 2 inches shorter). The reason it took longer was because George’s vertebrae were so frozen it took them awhile to open the neck back up and get it in place.  It was several more hours before George would leave the recovery room.

FINALLY, at 6PM his bed rolled by the waiting room on the way to his room in the Orthopedic Pavilion.  Steph was able to stay for a short while.  Then the first long night began.  George was pretty groggy and on dilaudid for pain management.  This tends to make him chatty.  So between groggy and chatty he was fairly entertaining.  Kept asking about who had stopped by.  Asking how long the surgery was.  Same conversations repeated.  I felt like I was home with his mom!! 

I was not able to fully go to sleep until after 10:30PM and awakened by him at 3PM asking for pain medication.  Again at 5AM to use the bathroom.  Today has been a day of adjusting and readjusting pillows and blankets.  The brace against the back of his neck has been very uncomfortable.  Sometimes, just as he gets comfortable – a change…. Perhaps it is to use the bathroom or when a therapist comes in.  Of course, nothing is easy as there are pillows and blankets to move away, finger cuffs to take off, leg circulation braces to come off and good ol’ “Chromium Chrissy” needs to be unplugged to take with him.  And when he returns to bed it all has to be put back in place.  What a cycle!  It can be frustrating because sometimes he takes it out on me.  I prefer when company is here because he tends to be more pleasant. 

The progress made today was that he can now have ice chips to eat and is getting some pills by mouth as a test to see if he does okay swallowing.  He also was up and did a short walk down to the nurses station and back.  Tomorrow they will add liquid nutrition to his regime.  And more OT and PT.  We are not sure if we will go home on Monday or on Tuesday, but they are definitely moving him in that direction.

I have a feeling it is going to be a long couple of weeks until his neck doesn’t feel so tender anymore and the pain level subsides.  I look forward to a day when he is able to do more for himself.  I know he hates being reliant on others (i.e., mostly me) to take care of even the simplest of tasks.  It takes its’ toll on his sense of self.  It is equally hard on me because there is a physical and an emotional demand that sometimes feels so constant I can never truly relax.  For, just like December, every time I sit down he tends to need something.  Or at least that is how it can seem.  

The “C” Word 1 year plus 153 days More twists and turns

 “God can suddenly shift things” (quoted just now as I watched Joel Osteen).  Truer words were never spoken.  In 2014 George was doing well until a kidney stone scan showed cancer.  He was doing so much better after 15 months and, bam, a fall causes a neck break. 

I had a couple of “kisses from the King” today in the form of messages from televangelist Joel Osteen.  We have found some of his weekly messages to be spot on with where we are.  Today, even his daily message spoke to us.  It went as follows:

“Delivered from All

Everyone has times when they feel overwhelmed or “outnumbered” by the things that are coming against them. You may have heard the saying, “When it rains, it pours.” For example, just about the time the air conditioner needs repair in your house, the transmission goes out in your car. It seems like one thing happens after another. It may feel as if all of the forces of darkness are coming against you. But the scripture promises that with God on your side, you have all the resources you need to have complete victory. You are never outnumbered because the Greater One lives in you!

The next time you’re feeling anxious, fearful or worried about anything, remember, He’s on your side. If God is for you, who can be against you? He promises to guide and protect you and lead you into victory in every area of your life!

“Father, thank You for Your faithfulness to me. Thank You for Your peace even in the midst of the storms of life. I know that You are with me, and I can stand strong because You will lead me into victory all the days of my life in Jesus’ name. Amen.”  “

Wow… that IS our life.  Just when we think things are under control something else comes up and throws off our course.  A saying that can be heard around here lately is, “We just can’t seem to catch a break!” 

The past seven weeks have been tortuous for George.  The brace he has to wear 24/7 is bulky and uncomfortable.  It constantly irritates his chin.  He can’t take a decent shower.  There are a few areas under the brace that haven’t had a super good cleansing in all this time.  He gets bored sitting at home all day, all week and looks forward to Fridays when I am off and I can take him with me for a couple of small errands.  The highlights of his days are when people drop by for a visit – or when is able to take a walk around the block with a buddy.  Companionship. 

This week we found out that the brace has not worked at all.  In fact, after his CT scan on Tuesday he got a call early Wednesday from Lan saying they were ordering an MRI stat – for that afternoon and they moved his appointment today up from the afternoon to the morning.  Needless to say, we were quite alarmed by the sense of urgency. 

We met with Dr. Menon this morning to find out what is going on.  It turns out that George’s neck is bending too far.  Since his neck is one long bone, the break is acting like a lever and the top is starting to bend.  He has gone from a 10 degree angle before the accident to 27 degree angle now.  The photo is quite disconcerting. 

Dr. Menon recommends a surgery called a “corpectomy”.  Described in spine-health.com as follows: “ When the cervical disease encompasses more than just the disc space, the spine surgeon may recommend removal of the vertebral body as well as the disc spaces at either end to completely decompress the cervical canal.”  It involves two separate surgeries hopefully performed on the same day.  The first surgery goes through the front of the neck and addresses the removal of some of the vertebrae bone which would then be replaced by a “piston” and packed with some of the bone material.  Then a plate would be put in place to stabilize the front. The second surgery would be done from the back where they would put screws in the bones to stabilize the back.  Surgery would take approximately ten hours.  That is a LONGER surgery than his CRS/HIPEC surgery. 

The goal of surgery is to restore the neck to where it was before the accident.  They will never be able to make it better than that.  There are risks involved as they will be very near the spinal column. 

We talked more about the disease in George’s spine.  He has DISH disease.  Diffuse Ideopathic Skeletal Hyperostosis.  Ideopathic means “of unknown origin”.  There is no known cause and no know treatment.  It is rare … I told George, “Honey, you really don’t have to be unique and have all these rare diseases!”  Most likely the disease has affected his whole spinal column which would explain why he cannot bend over very well.  His back may well be fusing into one long bone as well.  Gee, isn’t that great.  L 

We have an appointment with another surgeon recommended by our new “friend”, the nurse practitioner.  We will see if he has the same opinion and recommends the same surgery.  Then, we will need to plan a date for said surgery. 

 “God will lift you out of the pit.” (again, Joel Osteen).  Yes, we definitely need to be pulled out of this pit.  On the one hand we are grateful that George is alive and that we do have the option of the surgery and seem to have, once again, found a great surgeon (though we haven’t met him yet).  But on the other hand a ten hour surgery means long anesthesia and we know that wreaks havoc on George’s mental capacity. Not to mention the fact that we are facing another 7-8 hour cancer surgery once the neck issue is sufficiently healed.  Double edged-sword.  Really need help out of this pit!

As we watched Joel Osteen yet another nugget was spoken.  “The enemy cannot stop your path in life, God has the final say.  God hasn’t brought you this far to leave you.  The “second touch” is coming…. Anybody can give up, that’s easy.  Doubters are a dime a dozen.  Faith believers say “I may not see a way, but I know it will be shown to me.”” 

He then says that you need to be bold.  So we are asking for your second touch, dear Lord… give us a miracle again.  We know you have destined us for bigger and better things and are not done with our lives on this earth. 

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