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…