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.