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.