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.