The C Word – A New Battle Day 163 - Reflections on 2016

As the clock ticks toward 2017, it is time to reflect on this past year - - and what a year it was.  We began the year with George in a neck brace, his cancer surgery on hold to find out if his neck would heal on its’ own.  When that did not happen, we went into February with a whole different surgery on the books.  A corpectomy.  We were not happy about having to put off the cancer surgery but we had absolutely no choice as we couldn’t move forward with George having a major issue with his neck vertebrae. 

As the months marched onward we breathed a collective sigh when the brace finally came off.

Anticipating another surgery we decided it was time to move Mom to a memory care facility.  Having been through 4 evening caregivers over the span of 18 months or so, it was becoming evident that we were not going to find anyone reliable enough to take a 20-hour a week position to care for her.  We had a solid AM caregiver, Olive, that was with us for at least two years.  But the evening job had become my second job – and caring for George and his mom for a good part of the early months of the year was putting a strain on our lives. 

In May we moved her to a facility – and hoped we could have a few months off to relax and enjoy our summer.  The staff where I work noticed immediately when the burden of caring for mom was gone for me. 

Alas, our joy was short lived when, in June, George started having issues with pain and nausea.  At first we thought it had to do with something he ate as it was quite intermittent.  We cued up the next CT scan and within days the pain and nausea was quite severe.  The scan showed some blockages and surgery was scheduled sooner than later, thus obliterating our laid back summer plans. 

While in some cases this surgery was easier than the first one (no chemo), it had its own sets of challenges ranging from the wound opening up, to getting C-Diff, and new pains.  The recovery was much trickier as he came home with PICC lines, feeding tube and drains – all “new” things to us.  Round the clock care was required.  Comfort was elusive. 

Yet, this time he was able to walk much quicker than the last time and was getting around the block within weeks rather than months.  His appetite, as little as it was, was still better than the first time around. 

But, the diagnosis this time around was more difficult to swallow – to know that the outcome is truly out of our hands, that there is nothing we can do at this point to slow anything down.  After several second opinions we are resigned to that fact – yet hoping beyond hope that the disease will not move too quickly. 

While we continue to forge ahead and try to make plans ahead yet not too far ahead – as we know that things can take a turn quickly – the reality of our situation is never too far away from our thoughts.  Is this the last???... Thanksgiving, Christmas, New Years, etc.  Or at least is this the last one with any real quality?

While no one knows the answer to their days on earth, when faced with a “terminal” diagnosis (and that word in itself is gut-wrenching) each good day is met with a “hurrah”, and you do not take those days for granted.  It is equally possible that I could go before George as well as any number of other people we think will live forever.  None of us should take the days for granted.

Just a short while ago the song, “You Are the Wind Beneath My Wings” came on.  This music is very sentimental to me as some dear friends of our used it as the background music for a video they made for my late husband’s memorial service.  As I listen to it I wonder if each person here on earth has someone who is the wind beneath their wings – someone who inspires them, moves them to be better people, makes them feel worthy and loved.  I know we have people in our lives who move us, who “get us”, who are walking beside us on this journey.  They keep us moving.  They keep us hopeful.  We need that. 

We are doing our very best to live each day, appreciate each day, appreciate one another.  This holiday season has been pretty good.  George has held up fairly well, having more good days than bad.  We are thankful for that.

We were able to take a “real” vacation for the first time in 15 months.  I have a feeling there won’t be any more – at least any more that will take us on planes anywhere. 

Both Thanksgiving and Christmas went fairly well.  George did a majority of the cooking with a little help from either my son-in-law or myself.  Since George’s diet has changed quite a bit, he has not been able to truly enjoy the meals as he has in the past.

We have enjoyed having our grandkids here this week, playing with them, going places with them, making memories with them.  They will leave on Saturday and while we will love to get back into our quieter routine, we will definitely miss them. 

We look forward to spending New Years’ Eve with our friends, Keith and Bonnie.  We have spent New Years’ Eve with them every year for many years now.  Early dinner and movie.  This year we get to go out for a movie again after having to spend the evening at our home for a few years since we had “Mom duty”.  Actually, this is the first year we have not had the added duty of keeping an eye on Mom for any of the holidays and have been able to just spend time in the moment enjoying the celebrations. 

As we head into the New Year we have no idea where it will take us.  While 2016 was particularly tough, will the next one be better or worse? While I am more than ready to kiss 2016 goodbye, a part of me fears going into 2017.  The journey with the “C” word is a most difficult one.  It is hard to watch your loved one change.  It is hard to watch them struggle to have something close to a normal life while living in fear every day.  They are different than they were before their diagnosis.  Some of the differences are good, others are not.  I can only imagine what the mental struggle is like for George. 

Yes, farewell 2016!  My prayer is that 2017 is a tad bit kinder to us.  I know there are many changes ahead for me in more ways than just at home.  But I pray that I can continue to handle them with grace and dignity.  I pray that I continue to have the strength of mind and body to deal with whatever happens during the year. 

I pray the same for George - - and all others in my life.  May God pour out His love and fill everyone with peace. 

Happy New Year!

The C Word – A New Battle Day 149 - Gratitude

I’ve got a lot to be thankful for these past few weeks.  You see, we managed to finally make a trip to the East Coast.  A trip delayed by over two years since the last time it was planned we had just gotten the “C diagnosis” and had to cancel.  Ironically, the last time we cancelled it was even before we’d met the oncologist and he told us that it probably wasn’t a good idea because of the pain.  Back then there was no pain, no symptoms, no nothing! 

Two years and a few months later - - now there is some pain.  Yet we were able to make this vacation happen (trust me, there were a few moments in the days leading up to it that I wasn’t all that sure). 

Our flights both directions were pretty dull (thank goodness).  Although we’d reserved first class seats in order to be near restrooms, they weren’t needed except for normal usage.  (And only then because the flight was 6 ½ hours long and we had expected no time on landing to make a pit stop at the airport.) 

The East Coast bore very, very cold temperatures ranging from 21F to about 36F, most of the time hovering in the high twenties.  Brrrrr!  We spent the majority of time at my sisters place, venturing out perhaps once a day to do something else.  The rest of the time was at our hotel.

We were able to spend precious time with all my siblings and their spouses and even some good time with cousins that are still in the area.  We had dinner with some of my high school classmates and another evening with my college roommates and their spouses.  Other than the visits the only other thing we did was a trip to see a whole bunch of gingerbread houses on display at a library.  Yes, it is Christmas time in New England for sure!

We are grateful for this vast support system as each and every one of those have been following our journey.  They all welcomed George warmly and let him know that he was in their prayers. 

George held up fairly well but by days end he was more than ready to go sit quietly in the hotel and rest.  He experienced his normal pain and/or discomfort but nothing ever escalated.  We were prepared with all the medications but fortunately did not need to use them.  Yes, we were grateful for that as well. 

The holidays are fast upon us with Christmas just ten days away.  Am I ready?  As ready as I can be.  Just more gifts to wrap and a few things to bake or make to give to neighbors.  I have found that I am making only the easiest of things this year.  No breads, no homemade pumpkin pie…. One cookie and one bar recipe and then easy Chex Mix and Crispix Puppy Chow (a yummy combination of peanut butter, chocolate chips and confectioner sugar). 

Simple is better these days.  Even my decorations have taken on a more simplistic feature, just enough to let us know it is the holidays. 

It is more important to surround ourselves with our loved ones and our support system of friends these days.  All the rest is “the gravy” as they say.

We are grateful that we had a quiet yet enjoyable vacation (the first plane ride in over 3 years for George).  We are grateful for the opportunity to relax and enjoy the Christmas tree lights… to spend time with friends and with family… and, for the first time in years, not be held back by anyone’s schedule but our own as Mom is being well cared for elsewhere. 

The C Word – A New Battle Day 135 - Sometimes things just suck!

That’s what this disease is all about.  There are not a whole lot of options out there – and the ones that are there are, well, bah humbug. 

After receiving multiple types of reports and opinions, we decided to meet with the surgeon to figure out “where do we go from here”.  While his opinion is not surprisingly new news, it still sucks to know it’s pretty much our only option.  And that is that there should be no surgery unless or until George becomes symptomatic where nothing else brings relief.  Even then, we will have to weigh the pros and cons, risk versus “reward” to determine if it is a viable option.  Like I said… ick!  Sucky!  Sorry, that’s just how I feel! 

According to Dr. B, cytoreductive surgery is really not a viable option (that means, to just go in and take out some of the tumors and mucin) because the risk is higher than the value.  Even with a small bowel obstruction which would be the most prominent reason for needing surgery, is a high risk because the outcome could mean substantial loss for quality of life.  With only about 5 feet of intestinal tract left, to have less means dramatic changes. 

Does anyone mind if have a pity party today?  I hate that out of all the options and high hopes we had two years ago, we have been reduced to one very limited option.  And it’s not really an option - - it’s the only path even available at this point in time.  I hate it because it affects George so much.  He lives in fear every day, every time something goes in his mouth.  He worries about obstructions.  He worries about how this is affecting the way he lives.  He worries about the toll it will take on his family, especially the girls.  He worries about how it affects me – more than I worry about how it affects me. 

I think we both try really hard not to show how this is affecting us from an external point of view.  But internally, it is affecting us far more than we care to admit.  We don’t know how long this journey will take – but we do know that it will end far sooner than either one of us ever thought when we began our life as husband and wife.  And, while after the first surgery we figured the odds were higher that life would continue for eight or more years, that is not the picture being painted now. 

I do look forward to our short vacation coming up.  It is a laid back just-visiting-family and friends type of vacation… no sightseeing, etc.  Which is okay in my books because that’s what I do when I go “home” to Connecticut.  It will be somewhat melancholy at times because I do realize this may be the last time that I will be with my siblings and their spouses all at the same time and as a couple.  I don’t believe there will be any more journeys east with George at my side.  And that makes me sad, very sad. 

We are all too aware that we don’t know when it will be the last holiday together – or at least the last holiday when George is in a relatively good place in regards to his health.  And that, too, makes me sad. 

Debilitating illness certainly opens our eyes to the fragility of life and how quickly things can change.  Of course, I did learn that lesson nearly seventeen years ago.  These circumstances are very different than then, this just amplifies it a bit more.  I don’t think one is ever ready for it, ever fully prepared for it no matter what one thinks. 

We must continue to put one foot in front of the other, keep walking the journey.  Perhaps a miracle will occur – perhaps not.  We don’t know.  The not knowing is difficult. 

Enjoy the moment - - breathe - - make the best out of the day - - think positive.  These things are sometimes easier said than done…. And some days, like today, you just want to kind of wallow in the pity for a bit and allow the feelings to come… and then pick yourself up by the bootstraps and keep walking.  I’ll do that…. In a minute or two… 

The C Word – A New Battle Day 121 - “Oh What a Month!”

For the past month or so we’ve been taking advantage of the fact that George’s health has been fairly stabilized.  Between movie dates and play time with the twins and special activities, we’ve had quite a busy weekend schedule.

On the 5^th I treated my daughters and some special friends to a wonderfully funny night with Christian comedian Anita Renfroe.  It was so good to get out and laugh!

The next morning was our wedding vow renewal.  This was completely organized by our girls and we had no idea what they’d planned.  All we had to do was show up – and given that the event was in our backyard in the coolness of a fall morning –that was relatively easy to do.  They did some simple decorations, made a cake, and created a special photo background for us.  Stephanie wrote the ceremony and all three read from their “script”.  With some serious, lovely words intermingled with some humorous “tongue in cheek”, we laughed and cried throughout the ceremony.  My daughters asked George if he promised to “get the remote from across the room even though he didn’t put it there – not to step foot on a ladder or roof or sit backwards on the toilet – and hire professionals to fix things”.  His daughter asked me to promise to “put things back where they belong, respect the sanctity of his tools – get him glasses of ‘wa wa’ when he is thirsty – and not awaken him for a bowl of cereal when Mr. Moon is still out (something she did when she was little) – to control my lead food when he is in the car – and continue to provide massages and toasted English muffins with pinky butter on them”.  We both hesitated JUST a little bit before saying “I do”.  It made for a pretty special memory. 

The following weekend George arranged for a special birthday dinner for me – my 60^th.  That just seems to not even be real!!

After some discussion during one of our evening strolls, George contacted PMP Pals and has offered to help produce their newsletter.  It is one positive thing he knows he can do that will not only help others but will help him do something productive as he sits at home.  And I will organize get-togethers with some local people and try to grow our local PMP survivor and caregiver support system. 

We are still trying to wrap our minds around this disease.  The last “piece of the puzzle” was a report written by an expert (though not a name we recognize) done by an independent team as part of George’s insurance company.  This report was: 90% reports and analysis done over the past two years by George’s current team of doctors, 5% details about this “expert” doctor and a whole lot of reference notes that meant absolutely nothing, and 5% the actual “findings” of said doctor.  While none of it was really new news, the disturbing part was seeing in writing what they believe the prognosis is.  And that actually put “expected survival” rates on it.  It wasn’t surprising, at least not to me, as I have already concurred that George has 3-5 years at best.  This reported stated that with George’s particular mutation that average survival rate is 24-30 months.  I’m holding out for the longer period of time – but I totally know that things can change at any time.  One can still hope – and hope is all we have sometimes. 

We believe that more surgery is in the future but we don’t know exactly when. There are two schools of thought.  Both required a waiting game.  The first one would to be to do periodic CT scans perhaps every three to six months to look for tumor and mucin growth – neither of which show up really well on any type of scan.  We can be “proactive” and go in to do more debulking surgery and maybe prevent losing more organs. But, given that scans don’t show exactly what is going on there is always the chance that damage has already occurred.  The second school of thought is to not do surgery until there are actual symptoms such a small bowel obstruction where dietary changes do not fix the problem or some other problematic symptom arises.  Neither of these are optimal options – but they are the only options at this point.  Every surgery has risks with the main ones being altered physical states requiring more skillful attention afterward.  Whereas this past surgery we were able to have tubes and drains and PICC lines removed within six to eight weeks, in future surgeries those types of things could go longer.   

So, back to today – to this moment.  This moment where George has days that he can still eat with relative comfort, can walk without much pain, can drive and get around to do errands.  Taking advantage that although our daily processes are altered because of his physical stamina it is at least at a point where on most days we can get out and do things.  While we sort of know where this journey is going, we need to focus on what we have right now. There is no “expiration date” stamped anywhere yet and, at least for the immediate future things are going okay – and this may be the best that we can expect so we need to utilize these moments and make special memories. Memories which may be bittersweet – and which in all honesty I recently came to realize are more for me than for him… because I am the one who will need to remember the good times for a long time to come.  

As we enter this week of Thanksgiving there are things I am thankful for:  I am thankful that George and I have a comfortable home where we can sit and relax and be with one another.  I am thankful for his love.  I am thankful that we were able to renew our marriage vows.  I am thankful for our daughters who have gone out of their way to spend time with us and who created a great memory with the celebration of our vows.  I am thankful for their families for allowing us to spend time together, sometimes sacrificing their own family times.  I am thankful for the friends and family who continue to surround us with their love and support, cards, notes and phone calls.  I am thankful that we will be able to gather as a family on Thanksgiving Day with not only our children and their families but with my younger brother and his wife who are in the states for a few months.  I am thankful for a job that is supportive of my needs and co-workers who stand beside me when I need it and fill in for me when needed.  I am most thankful for my faith and my God who carries me through the best and the worst of times. 

The C Word – A New Battle Day 105 - God Be With You Till We Meet Again

A little diversion, sort of, from my regular topic.

I often wake in the middle of the night.  Many times as I awaken or as I try to fall back to sleep, a song gets “stuck” in my head.  Since I have a LOT of Christian songs on my playlist, it is usually one of those. 

This morning the song that came into my head was God Be With You Till We Meet Again, particularly this version by Selah:  https://www.youtube.com/watch?v=1fqu1ee5QNM 

I found that I couldn’t get back to sleep as my mind just wandered around as it tends to do in the still quiet hours of the morning. 

Sometimes I will turn on my Kindle which is by my bedside – and I did that this morning.  The very first post was one from my cousin – and it listed the obituary for my Aunt Vi.  I had heard from my sister over the weekend that she wasn’t doing well and probably wouldn’t live long, so I was not surprised at all.  Diagnosed with dementia around two days ago, she started on a fairly rapid decline in recent months and weeks. 

How appropriate then is the fact that this song was playing in my head.  My Aunt Vi is the last of her siblings to pass over to her heavenly home, a place she had already pre-determined she was going to go this year (she had said that she thought 86 was just the right amount of living).  She joins her beloved Tony just in time to celebrate what would have been his earthly birthday of November 4.  She celebrates with all of her siblings and most of their spouses – and with her parents – and all those who have gone before her. 

I didn’t always appreciate her.  As a young child she was our piano teacher (most of my siblings took lessons from her).  I dreaded the syncopated timer on top of her piano.  As I grew older I enjoyed visiting her.  She worked for Planned Parenthood for a number of years and while I can’t remember specific stories, I do remember laughing at her telling them.  The “stupid” things that people or patients said or did at the office – and the way she told us about them was very funny.  Aunt Vi was very easy to talk to – and she did LOVE to talk.  A LOT!  While she was not Italian, she picked up a lot of traits from Uncle Tony! Haha! 

We here on earth will miss her. 

God be with us till we meet Again… and we will. 

We are all on this journey towards our heavenly home.  We don’t know when it will happen.  While my blog posting has been on this cancer journey and all the experiences surrounding it, there are times when other things happen that bring to the surface emotions and feelings that are important.  Sometimes they are related to this journey – and sometimes not.

Today is All Saints’ Day.  A time to remember all of those who have gone before us.  As time goes on we start to forget about all of those people who were part of our lives.  Their memories start to fade.  But they are still there if we stop.

So take time today to appreciate all those who were part of your lives – who quite possibly helped shaped your life.  And THEN stop and appreciate all of those who are STILL here on earth with you.

My list of “saints” that I can think of right now:  Harold and Sara Pierpont (beloved maternal grandparents), Erskine and Elizabeth Russell (paternal grandparents), Callista Colacurcio Downey (beloved college roommate), Clarence (Zeke) and Barbara (Babs) Pierpont (loving aunt and uncle who lived just doors away while growing up, Alice and Joe Tucker (loving aunt and uncle as well!), Richard Pierpont (loving uncle), Tony and Violet Semararo (loving aunt and uncle), Dot and Bob Hill (aunt and uncle), John Haskin (brother in law), Pat Pierpont Burn (cousin), Gary Pierpont (cousin),  and of course, Mike Roberts (beloved husband, father of my children), plus a number of church friends and other friends…

My list of those here that I appreciate here on earth are far too numerous to list, but include my hubby, George,  my children Sara, Becke and Stephanie and their spouses, the grandchildren, my siblings and their spouses, our best friends not only locally but far and wide, my college roommates, church friends, co-workers and so on.  I am thankful for them all the time – they are my confidantes, prayer warriors, and so much more. 

My journey here is not done.  But when it is, I will see those “saints” who have gone before me – and God will be with those on earth until we see them again.  

The C Word – A New Battle Day 101 - Status Quo

My Facebook reminder told me that one year ago today we were had just returned from seeing Dr. Lowy.  At that time we had recently had the one year scan and were debating what to do next and seeking a second opinion. 

Today we were awaiting the results from the Stanford Tumor Board for exactly the same type of advice.  Dr. Harroldsdatter phone this evening to let us know what transpired.  Which is basically what I had posted right after we saw her a few weeks ago.  Hold off on doing any sort of systemic chemo.  Further treatment will be more surgeries going forward.  She advised that George try to watch what and how he eats to prevent any small bowel blockages.  She did also say that it looked as though the partial blockage was due to adhesions, not tumors or mucin related.  That was good news.  Though we are still awaiting results from the “satellite testing” to determine of immunotherapy will be an option, she did say again that the chances were pretty slim of that being a match.  She said that there should be at least six months between surgeries.

We will now likely phone Dr. Bastidas for a couple of reasons (1) it has been 3 months and would like to see how he feels things are going and (2) get on board to have scans done every six months unless something occurs in the meantime to warrant a scan.

So - - - back to watch and wait - - and pray and pray.  George says this is a “double-edged sword”.  On the one hand they suggest that you go until you start having issues that would warrant a surgery to fix it.  But going that long may mean that debulking surgery is more aggressive and need to have more “parts” removed - - and George is short on parts these days.  We will need to figure out how to handle this “watch and wait” process.  Ugh!

We have been enjoying some time during this “lull”.  Although George feels on the cusp of having blockages some days, or very uncomfortable because of various aches and pains, we have managed to have some great moments.  We’ve gone to the movies, attend his high school reunion, and this weekend are in Roseville babysitting the twins. 

We’ve talked to a nutritionist and have put ourselves back on a plant-based diet for the most part, eating more veggies and protein type foods and less meats (not given up on them entirely).  Nancy, the nutritionist, suggested that George try to eat 4-6 smaller meals, with half of them being easily digestible – things such as soups and stews, eggs, etc.  I’ve spent a LOT of time in the kitchen these past two weeks.  We’ve made two different batches of beef stew, a vegetable soup, frittatas, oatmeal and so on.  I try to make a few things in large batches that we can eat over several days.  This appears to be working – and George can tell when he’s had too much to eat or eaten the wrong types of foods. 

I’ve made reservations for us to go back East in early December to visit with family.  It will be a quick trip.  I used some of my frequent flyer mileage to upgrade our seats to first class. This way George has better access to a bathroom that is shared only by the number of seats in first class and not with the entire plane!  (It also gets us on and off the plane first!) Now we keep our fingers crossed that he stays healthy for the trip – because we haven’t had a vacation for over a year.

Today I had one upsetting moment.  On the way here we passed several accidents due to a huge rainstorm that had hit the area overnight – the first significant rainfall for us this year.  On I-80 the traffic backed up suddenly and my map told me that there was an accident about a mile or two ahead.  As we made our way past the accident scene, the tow truck had a truck he had pulled off the side of the road.  There was no roof on the cab – and there was a yellow tarp over something in the front seat - - the body of someone in the vehicle though could not be sure if it was passenger or driver from where the body sat.  My mind froze, fixated on the fact that we just witnessed a dead person under that tarp.  I flashed back to the image in the newspaper the day after Mike died - - an image of a body on a gurney covered in a tarp - - on the first very rainy day of 2000. I experienced a deja-vu moment and it was a bit disconcerting.  I blinked back tears for some minutes after driving by the accident scene. 

I was reminded again of how precious life is – and how not one of us knows what tomorrow may bring.  God knows the number of days we have but we do not.  Some of us know that our day may come sooner than later because of serious illnesses, cancers, age, etc.   

Not a day goes by that we are not reminded of the fact that George has cancer.  The elephant still sits by close at hand.  I am glad that George and I are having some time to make new memories with one another, with our families and our friends.  We’ve had some time to laugh and to relax.  For brief moments we are able to not think about the C word.  I am grateful for those precious moments. 

Now - - back to life with 8-year old twins!  Their giggles are enough to cheer anyone up!!

Next up in the cue (next weekend)- - a girls night out for Dawn and our vow renewal! Our children are in charge – and we have no clue what they’ve planned for us!  I’m sure it will be a lot of fun!!

The C Word – A New Battle Day 84 - It’s all in the Sequencing – Numbers and Letters

Today George and I celebrated our 14^th anniversary.  Our wedding date was 10/11/02…. Chosen because if you take out the dashes it becomes 101102… or more specifically, 101 102.  Easy to remember.  Also it is exactly one month before my birthday (whereas his first wedding was exactly one month before his birthday!).  Sometimes we need those little tricks to remember dates.

Just as we need those tricks to track things, so does our body.  The past few days we have heard about genomes and DNA and mismatched pairing and all sorts of stuff that is way over our heads - - but for which there is equipment to help break those substances down in order to help doctors and researchers in their work. 

One of the acronyms we heard this weekend was MSI – Microsatellite Instability.  This is one test that is done to determine if one is a candidate for immunotherapy.  Apparently if this number is high, ones response to immunotherapy is considered to be pretty good. 

We also heard about KRAS, GNAS, FBWX7 and more.  These are specific genomes that are tested to determine which type of chemo may work best.  Some of them appear distinctly in people with PMP cancer.  The goal is to keep looking at that data in order to one day be able to diagnose the disease before it has become a problem.  Right now, it is still in the very early stages of investigation and, given it’s rarity, there are not a lot of people looking at it.  George’s test showed some mutations as noted above, but the only clinical trials going on for it are at MD Anderson Texas, and the two chemos being used are more for something like kidneys or liver (vascular) or something along those lines and are solid tumors.  Not our type – not even worth checking into.

We saw slides about genomics and the four basic alpha characters assigned to everyone’s DNA.  Who we are, inside and out, is often determined by these pre-disposed characters.  Things that have happened in our lives can alter those to some degree, but not all things. 

After a weekend being educated further into “our” disease, and speaking to others, we felt more comfortable being able to ask questions and understand answers when we went to Stanford to see what they may be able to offer us.

We spent about 45 minutes with Dr. V Chen, a fellow at Stanford.  She appeared well versed in PMP and the available treatments at this point in time. Some of the things she told us were:

-       The 5 year survival rate for someone with this cancer is high, the 10 year survival rate is pretty good. 

-       She explained a bit about how PMP can be low grade aggressive – meaning that it proliferates (grows) mucin at a high rate and is relentless.  Is this what we are dealing with?  Low grade does not respond well to chemotherapy (high grade does respond better).

-       In regards to immunotherapy – about 5% of those tested will be considered for immunotheraphy. (I think I am stating that correctly). Of those, about 30% will have a positive response.  (And response is known within 3 months of starting treatment.)  Immunotherapy is done via IV injection.  If one has an autoimmune disease such as thyroid disease, etc., it will make those diseases worse while it supercharges the body.

-       Since Stanford is an academic research facility, they may know more about various diseases, but may not necessarily mean they can DO more.  They can get the ball rolling in the right direction.

-       Some medications for rare cancers are easier to get insurance to pay for (or for the manufacturers to help pay for) than “common cancers”. 

As we spoke about George’s case specifically, she indicated that while chemo is a reasonable strategy, it should not be the first thing he resorts to. She said that having chemo that has a low success rate on someone is worse and could actually shorten, not lengthen, life.  It makes people so sick that their immunity is compromised and makes fighting off things when the disease has progressed later more difficult.  It may only “buy” a short extension to life if any at all.

 The plan of action on their part is to get some more in-house testing done.  They will get the CT scans sent over, a specimen to do their own pathology and MSI testing, etc.  Once they have all of those things, they will look them over and present George’s case to the Tumor Board at Stanford (next week or the following) and they will then let us know what they feel is the best protocol. 

The recommendation from them may be to just keep doing debulking surgeries to remove the mucin that causes the problems.  They want to see the scans to determine if that is something that needs to happen in the short term. 

So where do we stand after this “information download” we have received.  We will set aside doing chemotherapy at this point and await not only the Stanford recommendations but also information from a third party that was recommended by George’s workplace.  From there we will weigh the results and do what feels right – what George feels is right for him. 

As my anniversary card to him stated (and his to me), we are stronger together, we will get through this together. “Will you marry me again?”, he asks.  “Yes, I will.”, is my response.

101-102…. You and I are far from through!! Happy Anniversary, honey!

The C Word – A New Battle Day 82 - New friends with something in common

We spent most of this weekend at events held for others with PMP cancer.  Last night was a social event for dinner at Massaro and Santos in Monterey.  While we thought this event would bring together more of the “locals”, we discovered that people came from all over the U.S., Canada and even Australia and China.  We mingled with other patients and caregivers, listened to one another’s stories, learned some things and laughed together as well.

We learned how PMP is handled in China and a little bit about their health care system.  I sat next to someone who has been on TPN for nearly a year and also has a GI bag.  We talked to people who have are part of the “one and done” team – those who had one surgery and are living cancer free (some may also have had chemo as part of their regiment).  And we talked to people who have undergone one or more rounds of chemo.  Some people are long term survivors (10 or more years), more than half were five years or under.  There was mention of a few that we’d never met who lost their battle in recent months or years.

Today we spent the day at the Bayonet and Blackhorse golf club in Seaside hearing from an array of speakers.  They included a surgeon specialist from UC San Diego where they have just started looking into genome therapy for this disease, from the company that has built the machines that do the genome testing to determine specific mutations for all sorts of cancers and diseases, from Foundation Medical which does genome testing (and was the organization where George’s samples were sent for testing).  We also heard from both PMP Pals Network that held this event and ACPMP (appendix cancer/pseudomyxoma peritonei).  PMP pals network is a group that support those going through this cancer journey with supportive people, connecting people to services and so on.  ACPMP is a fundraising arm that support research specific to these rare cancers as well as offering support to those going through PMP treatment. 

The last speaker was named Anna Renault, a 67 year old woman who has been diagnosed and treated for 9 different cancers as well as had many other illnesss and “bad things” happen to her over the past 50 years.  She still has quite a zest for life and talked about the importance of having faith and hope, how to find the good in even the worst of situations.  I sat there and marveled at this walking miracle as she proclaimed that God has allowed her to live this long in spite of all the turmoil and spoke of the various ways she has used this “extra time” in her life to write books, mentor others, and even do an internet talk show.  She encouraged others in the room to use extra time on earth to use their talents to do something positive.  I commented to George that he has nothing to complain about in comparison to her - - specifically talking about the times when George comments, “the hits keep coming, when do we catch a break”.  Anna was inspirational to say the least. 

During the day we were able to connect with a couple from San Jose as well as a very newly diagnosed man from Fremont and hope to keep in touch more frequently.  We met up with our friend Pam and her husband who were part of the gathering for PMP that I set up this past July. 

While we did not hear much “new” today, we were able to have things we’d heard about explained in more detail.  Some good, some not.  But overall the theme was “do not give up the fight”.  Even if the odds are not very good for some treatments, they are better than doing nothing.  We were also encouraged that science and technology are making some huge advances overall.  While we are part of a “rare cancer” group, eventually there may be ways to detect and determine better targeted therapies for cancer across the board. 

We came away from this weekend with more friends, more supporters, more things to think about as we head into our appointment with the GI Oncology doctor at Stanford tomorrow afternoon. It is likely she will have nothing new to offer us at this time, but we need to get in there and make it known that we are interested in ANY treatments that may make a difference if they hear of anything as technology makes advances. 

We are grateful for all of the people we met over the weekend and are so glad we took the time to attend this event.  We are bonded by our mutual disease and now have new resources to turn to as questions come up in our journey. 

The C Word – A New Battle 73 - Two years since first MOAS

It’s hard to believe that two years ago today was one of the longest days we’d experienced as George underwent the Mother of All Surgeries (MOAS).  The days leading up to this were filled with trepidation as we knew the stakes involved.  However, as the day evolved our hope was being restored.  When we heard that HIPEC was “a go”, a load was lifted from our minds.  Yes, it was a massive surgery and he came away with a few less organs, but the outcome filled us with renewed hope.

Over the course of the past two years we have had a series of mountains and valleys in not only the fight against this disease but life in general.  Each scan brought anxiety but everything appeared to be minimally invasive.  While we know that scans don’t show everything, we still wanted to believe that the disease was under control.  Instead, the cancer tumors had spread and the mucin, while not anywhere near what was found two years ago, was enough to cause a tangled mess inside George’s belly. 

In the middle of all this was George’s broken neck which forced us to move the cancer surgery out farther.  Would things have been better had we been able to have the surgery when we’d planned?  Or was there divine intervention that pushed it out?  We will never know the answer to that.

Now, two years later we find ourselves with rising levels of anxiety as we prepare to do more battle with the cancer.  We have so many questions, many of which cannot be adequately answered.  While we monitor statements, questions and thoughts posted on our PMP dedicated Facebook page we are filled with both hope and despair.  We have asked questions about Folfox chemo treatments – side effects and outcomes – and hear both ends of the spectrum.  For some it has stalled the disease or shrunken tumors, for others it did not do any good. Side effects range from nausea to neuropathy, most of them appears to be short-term which is good.  George is now experiencing some digestive issues stemming from the small bowel obstruction (SBO) he had last week. Little tweaks or pangs of pain cause stress because we don’t know if the SBO was from something getting caught up on an adhesion or from pressure of a tumor.  There are times George is so afraid to eat.  On the plus side, we did read a post about SBO’s where others have cut back to lots of liquids and movement such as walking when they feel as though a blockage is beginning.  He tried that yesterday and it appeared to work.

In the middle of all of this craziness we are trying to attempt some degree of normalcy.  We have had or have activities coming which give us something to look forward to.  We’ve gone to see a movie recently (Sully – great movie) and last night attended a San Francisco Giants game up in the city.  We took the train with some of the volunteers from the blind center, something I have never done and that George did many years ago.  Not only did George enjoy the outing, he even indulged in a hot dog.  And, thankfully, it appears to have gone through the digestive process pretty well. 

Although we do have fun things planned (an overnight trip to Monterey to attend the PMP Symposium to hear about latest news with his cancer, a surprise evening for me right after our anniversary and I have no idea what is planned, a dinner-dance for his high school reunion, a weekend away to watch the twins, and last, but certainly not least, renewing our wedding vows), we are painfully aware of the fragility of George’s situation and know that things can change quite rapidly. 

Life has become a series of trial and error, figuring out what is okay to eat or not, what level of activity can be tolerated or not.  It is a time of trying to take advantage of the moments when “life is good” while knowing full well that what lies under the surface is very, very scary. 

We have hope, yet it is a somewhat guarded hope.  While there are still a lot of unanswered questions, a lot of unknowns about treatments and whether or not they will work, we are not yet ready to give up on a future.  We will continue to do our best to make future plans and take advantage of moments given to us to enjoy time with others and with each other.  Life is precious. 

Reminds me of something I’ve read before and which appears to be circulating on Facebook again these days.  I do not know the origin of this piece.

Imagine there is a bank account that credits your account each morning with $86,400. It carries over no balance from day to day.
Every evening the bank deletes whatever part of the balance you failed to use during the day. What would you do? Draw out every cent, of course?
Each of us has such a bank. It's name is TIME.
Every morning, it credits you with 86,400 seconds.
Every night it writes off as lost, whatever of this you have failed to invest to a good purpose.
It carries over no balance. It allows no over draft. Each day it opens a new account for you. Each night it burns the remains of the day.
If you fail to use the day's deposits, the loss is yours. There is no drawing against "tomorrow."
You must live in the present on today's deposits. Invest it so as to get from it the utmost in health, happiness and success!
The clock is running!! Make the most of today.

To realize the value of ONE YEAR, ask a student who failed a grade.

To realize the value of ONE MONTH, ask a mother who has given birth to a premature baby.

To realize the value of ONE WEEK, ask the editor of a weekly newspaper.

To realize the value of ONE HOUR, ask the lovers who are waiting to meet.

To realize the value of ONE MINUTE, ask a person who just missed a train.

To realize the value of ONE SECOND, ask someone who just avoided an accident.

To realize the value of ONE MILLISECOND, ask the person who won a silver medal at the Olympics.

Treasure every moment that you have! And treasure it more because you shared it with someone special, special enough to spend your time with. And remember time waits for no one.

Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why its called the present.

The C Word – A New Battle 65 - Blockages

Today we had our first post operative experience of a small bowel obstruction.  It came on rather quickly – and we reacted just as quickly with a trip to the emergency room.  I had texted Dr. B that we were in the ER.  We had phoned his office earlier and were told he was in a meeting and she would send a message to him that we weren’t sure if we should go to ER or not.  My message only confirmed our decision.  He responded a bit later that he had just gotten out of the meeting and received our message and he would call the ER on his way to Los Gatos.  However, he stopped by the ER and saw George just as he was headed to get the CT scan.  He did an evaluation and gave possible scenarios.  He then stopped by to see me and give me the same.  He indicated that the options would be (if an obstruction was found) to admit overnight to keep an eye on him, give IV fluids and ensure pain was controlled – or to go home and try to do the same.  I got the feeling he was leaning towards George deciding to stay overnight. 

A CT scan showed an early stage partial blockage.  The morphine was doing the job and he was doing okay.  The next step was to see if George could tolerate drinking fluids.  If he couldn’t then he would have to stay overnight.  He drank a cup of water and had a little bit of cramping but it subsided quickly enough.  It was time to talk about discharge!

We left the ER about 4 ½ hours after we got there, having had labs, CT scan, etc. completed.  The medications he might need are ones we have on hand at home so did not need to make an extra stop to get those on the way home.

Unfortunately, this type of thing will probably be something we have to deal with more than we would like to.  It is part and parcel of this dread disease.

On a side note: My sister arrived two days ago for a couple of days to stay with us.  We had some nice sister time both last evening and for the entire day today.  It was upon our arrival home this afternoon that we found George having pain and nausea issues.  Tonight we pick up my niece, Alissa, as she will spend the night with us as well and tomorrow they will head over to Santa Cruz to see my nephew and niece-in-law.   Beth will return back here on Saturday night and heads out on Sunday morning.  It’s been nice having her here to chat with. 

The C Word – A New Battle Day 55 - Next???

It is sometimes hard to believe that George even has cancer.  On the outside his healing has been extremely remarkable.  I find it incredulous that it has only been a bit under 8 weeks since surgery.  Yet, on the other hand I find it hard to believe all that HAS taken place in this span of time.  Think of it – nearly three weeks in the hospital.  Followed by coming home with PICC lines, feeding tube and a drain.  Week by week, one at a time, those would be removed.  A day here and there George would feel well.  Nearly always followed by what he calls “not so good days”. 

And then, finally, the last of the tubes is gone and he had a pretty good week.  He is able to make walks around the block pretty well.  Still tired, but not as bad as he was before. He looks as good as he did before he broke his neck.  His appetite is fairly normal.  He just looks pretty good and “normal” all things considered.  Not fully healed on the inside just yet, but the change from where he was just two months ago is pretty phenomenal.  For those on the outside looking in, you would find it hard to believe that on the inside a cancer is residing. 

My own body finally gave out last week.  Thursday afternoon I started not feeling so well.  By nightfall I had a temp over 101.  Fortunately – I had a husband who was feeling well enough to monitor things.  Unfortunately, I made a trip upstairs in the middle of the night to retrieve an extra blanket and bathrobe.  Stopping in the bathroom to relieve myself, I was quite out of breath and not sure which end of me wanted to be first to be relieved – I sat down - - and the next thing I know I was on the floor apparently having passed out.  Not so good.  Felt better though (short lived).  Made my way back downstairs and a short time later let George know what happened.  It took a lot of Tylenol and rest before I was feeling better (a couple of days) – I think I had a touch of the flu.  But, again, at least George as able to tend to me for a day or two. 

Over the past few days we started to do some more normal things… together.  Went to the mall in search of a new wedding band.  Not to replace the one he already has – but one he can wear since his original band is a full size too large for him.  He lost so much weight after the first surgery.  This second surgery did not result in much of a weight loss for him – maybe 5 to 10 pounds in the short term (as opposed to over 40 the first time, plus the 20-30 he lost on his own prior to surgery). 

But today we start phase two of this journey.  What will we do next?  We met with Dr. Sheh to find out what is in his bag of tricks.  Will anything help?  Unfortunately, there is no treatment that conclusively will alter the course of his cancer.  There are some long-shot maybe’s, but even those are pretty low on the treatment scale.

This is what I believe we learned today:

1.     Wait, watch and see.  This was the course we have been on since the last surgery.  What we learned is that there is no definitive, viable way to detect the growth of the tumors.  And we also learned that even though WE think the tumors picked up speed, in the world of cancer it is still labelled “slow growing”.  We are grossly aware that the idea of any future surgery and cyto-reduction is not very appealing in the way of quality of life afterwards.  With so many organs already fully or partially gone, there is little left that can be taken out. 

2.    Folfox chemotherapy.  This is traditionally the chemo that is tried with this type of cancer.  It is not too successful as it is meant to target colon cancer - - and although this cancer might be considered in the broader umbrella of GI/Colorectal cancer, it is not.  It is a stand-alone type of cancer.  In a few, very few cases, it may slow the growth of tumors temporarily.  No guarantee.  We asked how this is administered and found that a port is put under the skin in the upper chest area.  The chemo is administered over a 2 day period, every 2 weeks, for six months.  (From what I could gather, a visit to the clinic to hook up the chemo is required, then go home and return 2 days later to get it unhooked.)  Side effects could include diahrrea (more than we already have to deal with), fatigue during and for a few days after (normal these days already so assume it would be worse), neuropathy in feet and/or hands (not a pleasant feeling from what I hear).   

3.    Dr. Sheh sent George’s pathology out for more extensive genomic testing.  Matter was tested for several hundred possible genomes.  Four were identified in George’s “DNA”.  The acronyms for these are foreign to us:  FBXW7, KRAS, GAS and LZTR1.  None of these have FDA approved therapies in George’s type of cancer.  The latter two do not have any FDA approved therapies in any type of cancer.  The first two do have FDA approved therapies in OTHER types of tumors.  The KRAS targets melanoma and lung tumors(? I think that’s what he said), but Dr. Sheh says those are not showing too much success.  The first one is the only one that MAY apply to George.  There are two pill type chemos used for treatment.  The down side is that the only place doing a clinical trial is at MD Anderson in Houston, Texas.  Should we apply for that trial and be accepted, it would mean travelling to Houston for treatment and going on a monthly basis for monitoring.  With no guarantee that it works.  It is only a Phase I trial which means that it is in an early stage of testing.  We would have to do more investigating about costs, and find out more info on this trail to even determine if this is a viable option to apply for.

Not known yet is anything about whether or not immunotherapy is viable.  While Dr. Sheh sent out samples to that lab, he has not heard anything yet – and he should have received something weeks ago.  He will check into where that sampling stands.  He also suggested we try to see if Dr. George Fischer, the PMP specialist/researcher for Stanford, will see us and will put in a request on our behalf.  This doctor refused to see us the last time for a second opinion so we don’t think he’ll change his mind.  We could also send the results to another specialist and get their written recommendation to see if they suggest anything different. 

We chatted about the three choices put before us today, and it appears the most viable one in the short term is to give the Folfox a try.  It can’t hurt, it may help.  While not a pleasant experience, it is probably better than doing nothing, because doing nothing most assuredly did not work for us these past two years.  We can still investigate all other options and find out if George is a candidate for other treatments. 

We aren’t making a decision today.  George needs another month to more fully heal from the surgery before we can proceed with any type of treatment.  We have a follow up appointment in mid-October to do labs and see if anything else has come to light during the interim, see if we’ve had a chance to get another opinion or find out any other information. 

Clearly, none of these are ideal solutions, none of these has any apparent long term survival rate.  This cancer is vastly underfunded in the way of research because there aren’t “enough” patients to make it worthwhile for investigations into cures. 

In the meantime, we hope to take advantage of a period of time that George is feeling pretty good.  A few weekends away (the ones we didn’t get over the summer), some time with the kids and grandkids, time with friends and family, time to make some special and precious moments. 

But…. Maybe I should put some good padding in our bathrooms???  Or bubble wrap George…. To make sure that nothing else gets broken in the meantime?!?!?! (Sorry honey, don’t want to leave anything to chance!  Haha!)

The C Word – A New Battle Day 49 - Yippee! No extra “jewels”!

Well, we had a great day on the 1^st and then stopped the feeding tube.  The next morning George started complaining about being very sore at the site of the feeding tube.  He had really wanted to go with me to Costco but ended up staying home because he was in such pain.  That pain escalated over the next few days.  He actually started having me administer pain meds via the feeding tube - - and that says a lot about how much pain he was in.  He literally spent four days not budging from the chair except for bathroom trips.

This morning I sent a text message to ask Dr. B if he had office hours and let him know that I believed we needed to take the feeding tube out.  I told him about the pain that George was in.  He sent a text message right back and said he had never heard of anyone experiencing a lot of pain from the feeding tube and though perhaps there was an obstruction.  He said to come right over as he was in the office doing paperwork. 

We went in and he asked some questions.  The pain appeared to be isolated to the skin around the opening for the feeding tube.  It occurred only when George moved or when someone just touched the feeding tube even lightly.  He said, “I think we need to remove the tube.  Do you agree?”  George said, “yes” and with that he pulled the tube out.  George was totally not prepared for that as he groaned in pain.  I just sat in amazement as this three foot long tube came out.  Holy smokes.  I had no idea how long it was!!  Now, for the first time in seven weeks George is free of all the extra “jewelry” as he called the various drains, PICC lines and feeding tube. 

We had to wait for at least ten minutes to allow the wound to settle down.  Then he removed the dressing and re-applied a new dressing and then sit some more.  The whole time Dr. B sat in the room and chatted with us.  We asked about his granddaughter and he went to grab his phone to show us a recent video of her.

George then asked him how much he knew about PMP treatments outside of the surgical arena.  He proceeded to tell us that, aside from a few researchers, he is very well versed in treatments.  He also told us he had just heard about the PMP pals symposium in Monterey next month and that he hoped to be able to go.  We told him we planned on being there.  We told him about our appointment this coming Monday with Dr. Sheh, our oncologist and that we would be hearing what he thought should be the next step and about how we weren’t sure about chemo.  He then said that the term chemo is a broader term for the treatments out there and that there are different kinds of chemo under the umbrella.  He talked about targeted chemo, various immune-type therapies, etc.  I think he sat with us for nearly 40 minutes.  It was a great conversation.

In the middle of this appointment my dentist called with a last minute opening for the hygienist.  (I had to cancel my appointment at the beginning of August because of George’s hospitalization and had asked them to call if they had an opening.)  Today I got to do some “catch up” on medical appointments!!

This afternoon after a short nap we had a visit for two hours from George’s buddy, Steve.  That was followed by a visit from our friends, Vernita and Steve.  AND, on top of that, George was feeling well enough to go out for dinner!  That was so amazing.  I am so grateful!  We had a marvelous visit and a pretty good dinner!  SOOO much better than early this morning and the past weekend.  Hoping that we get a break for a bit!  

The C Word – A New Battle Day 43 Trial run

Tonight we begin a trial run of no feeding tube.  After cutting back to 500mL and then 400mL, Dr. Bastidas suggested we stop the night time feedings and see if George can maintain his weight.  I imagine that, as with the first night after each drop, there will be a weight decrease and then it should pick back up again.  I am looking forward to sleeping in my own bed all night, uninterrupted.  Wow, first time in nearly 7 weeks I think! 

And I do so need it.  I had a health problem this week.  I thought I had a bladder infection earlier this week but tests showed that was not the case.  Possibly a kidney infection??  So the doctor put me on Cipro antibiotic.  Although my belly and back started feeling better, I experienced some odd sensations in my leg and arm and also started to get high blood pressure readings (very high) as well as abnormally high heart rate.  So… off to the ER I went last night (thank you to my daughter, Sara for taking me and staying with me).  All of the blood tests did not show anything wrong – a few numbers slightly high but nothing alarming.  And EKG did not show signs of a stroke which an advice nurse on the phone thought was happening.  Apparently I am very sensitive to some medications - - and since I never had meds as a kid I never had the opportunity to find these things out.  My “not good” list of meds now includes Benadryl, the TDAP vaccine and Ciprofloxacin.  Ugh! 

As a result of all the activity last night, I am a bit tired this evening and will retire to bed shortly, leaving George to his own in the living room.  I know that this will not bode too well with him he feels somewhat abandoned and lonely.  However, given the circumstances of the past few days he will be okay with it on the short term.  I look forward to the day he re-joins me in the bedroom where he belongs! 

Today we ran a few errands.  Looking at wheelchairs for his mom.  Just pricing them out for now and seeing the quality of various brands.  He will likely go online to shop as it is less expensive.  And she does not yet need one as she is using ones that the skilled nursing facility has on the premises. We stopped in to see her for a few minutes.  The facility had therapy dogs visiting.  There must have been about ten dogs of various breeds and sizes.  Needless to say, Mom was smiling a lot and enjoying that very much.  She’s always in good spirits and happy to see us.  Minutes after we leave she won’t remember we were there, but in those moments she is happy.  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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