The “C” Word – 1 Year plus 82 days- Where do we go from here?

After meeting with the oncologist, George decided that perhaps he should help raise the odds that he could rid his body of the tumors or at least slow them by turning to a meat/dairy/sugar free diet.  We went and purchased some books on this and asked questions of the gal we’d met who had only water balloons instead of cancer-ridden tumors.  We purchased a juicing machine… and we started eating healthy at home.  At first this helped us each lose a couple of pounds and we felt that we were being healthy individuals.  After the first couple of weeks it slowed down a bit but we reintroduced some breads and things which may not help. 

We met with Dr. Bastidas a week after our oncology appointment in hopes that he would have the direction we needed to take now that we knew that cancer had returned. 

What happened surprised us.  He walked in the room and said, “How are you doing?  What do you want to know?”  We said that we hoped he would tell us what is next.   Instead he said, “You have two options.  One is to do another surgery and the other is to watch and wait.”  He then went on to say that there is no data to suggest when to do a second surgery.  He also said since it is a slow growing appendiceal cancer that we certainly could wait and not do anything for the time being. 

He suggested we talk to some other experts for their opinion and have another CT scan in three months rather than six before coming to a decision.

We came away from our appointment a little puzzled, confused – because the one man who always managed to give us hope, though still giving us hope, did not give us any concrete answers.  He did say they would contact Stanford to see if we might get in to see Dr. George Fisher, a well known oncologist who also happens to be a friend of his.  We also decided to seek out Dr. Andrew Lowy, the closest PMP expert to us at the UC San Diego Medical center.

After waiting a few weeks and hearing nothing from Stanford, George decided to give Dr. Lowy’s office a call and was given an appointment for one week later.  We made arrangements to drive down on Monday, Oct. 26^th for a 9AM appointment on the 27^th.  All the paperwork was faxed, emailed and called in for the visit.  We were greeted by his Nurse Manager and the chief resident surgeon who both met with Dr. Lowy before he came in to see us.  After going through the protocol of the visit he asked what we needed from him and we said that we were looking to him for some guidance about what to do next.  He did state that he did not feel that systemic chemotherapy or any other type of cancer treatment needed to be considered as they will do nothing for this type of cancer.  He offered up some statistics that we did not know.  The fact that a second surgery could possibly “cure” George – statistically there is a 30% chance that could happen, especially if the only places visible are the two tumors which may or may not be left over from the initial surgery.  He does not automatically do HIPEC on the recurrent surgeries but would have it available just in case it is needed.  He also stated that if George did absolutely nothing, no surgery, that there was a 50% chance he would live another ten years (50% of the people do not last that long, 50% live longer).  We could also wait for surgery until George was symptomatic, but given that he has never had symptoms, that probably would not work for us. 

We mentioned the fact that we were doing a vegan diet which he poo-pooed stating that there is no scientific evidence that this kind of diet helps cancer patients.  If we don’t really like doing it he said there was no reason to stay with it.  I think we believe otherwise as we have met someone who appears to have been cured – and we have read or seen about others beating the odds – but decided that we might eat meat on occasion but would not keep it at the house, only turn to it if we are out for a meal.  (Everything in moderation….)

On the way back from San Diego we discussed our options and figured that the ball is clearly in our court right now.  George does want to go back for another surgery but is relieved that not having the chemo might be an option.  We can basically choose a date that fits into our calendar knowing there are a few events coming up in the new year that we might need to steer clear of.  While he is not looking forward to another surgery – no one does – he does feel better that even though the odds are low that he can be rid of the cancer for a good part of the future, it is better than have 0% chance.  As is said, “something is better than nothing”. 

We did hear by way of our oncologist that the Stanford expert sees no reason for us to see him.  Supposedly he has sent a note to Dr. Bastidas stating that he does not know of any other clinical trials or know of any other treatments available and that he is deferring to them for judgement.  We were a little bit put off by how this was handled by Stanford – like we are not “good enough” to be seen by him.  Honestly, though, I always figured that Dr. Lowy’s opinion would carry far more weight than Dr. Fischer so though we are disappointed in not getting an appointment with him, we have more confidence in Dr. Lowy. 

In the meantime we are continuing to stock lots of fruits and vegetables in the house.  George likes going to the Farmer’s Market near us on the weekend to stock up on organic produce.  We spend the week making salads and juicing and cooking from scratch (when cooking is done anyway).  A friend let us have a lot of tomatoes and I made homemade pasta sauce.  I have also made applesauce to add to our oatmeal as a sweetener or to add to other things. 

George has been home on disability for a few weeks now and even though he is not working he gets tired very easily.  His recent bloodwork did not show any anemia so we are a little puzzled as to why he is tired so much.  Much of the first few weeks of disability was spent getting insurance going and on track as well as working through getting next year’s health insurance benefits in place. 

On the “plus” side is the fact that we have an evening caregiver back in place for Mom so I no longer have to work all day and spend evenings caring for her (during the work week).  Weekends are still up to me to take care of her.  During the week I get to relax and spend time with George again.  He likes that !!  J  

The “C” Word – 1 year 2 days Post Op- Timing is of the Essence

We really like our surgeon, Dr. Bastidas.  Our visits to him normally put our mind at ease.  He knows his stuff.  He can explain it really well.  He has a plan.

Not so today.  Not exactly.  Presented with the findings of the CT scan he tells us we have two options.  The first is to wait it out and see how slow growing the tumors are (indications are that these will grow very slowly).  The second being to do another surgery.  He explains the pros and/or cons of both.  Certainly any surgery brings its’ own set of risks.  You have to weigh the risk versus reward factor.  Yet getting rid of residual cells at an early stage certainly would feel better.  The problem we will have is trying to plan surgery before it is invasive of any other organs. 

George tried to pin him into a “favored” opinion, asking him, “If this were your favorite brother, what would you tell him?”  He replied, “I would let it be his decision.” 

To help us make an educated decision, he suggested we get the opinion of other experts in the disease.  The closest oncologist is Dr. George Fisher at Stanford. Dr. Fisher treated celebrities such as Steve Jobs and Patrick Swayze.  When the press found out about Patrick Swayze, he was bombarded with people wanting to be treated by him.  He ended up “closing” his practice except for patients referred by other doctors. Dr. Fisher is a personal friend of Dr. Bastidas as they set up the cancer center at the Palo Alto facility.  After seeing Dr. Fisher, we may send the records down to San Diego where the closest PMP surgeon practices at UCSD, a Dr. Lowy and his group.  That means taking a couple of days off to head down that direction to get his opinion.  These are pending referral requests from Dr. Bastidas so we will wait to hear from them. 

The second opinions, coupled with another CT scan to take place in January to see if there is any further progression of disease, will enable us to make the best decision as to when another surgery will take place or at least narrow down the time frame.  On the “plus” side is the fact that the next surgery should not be as difficult as the last one.  With any luck there won’t be any full organs removed though it is possible that a short bowel resection is possible.  Some more scraping, and more HIPEC (heated intravenous peritoneal chemotherapy) like the last time.  Overall, it should be shorter with a shorter hospitalization. 

This is the first time we left Dr. Bastidas’ office not feeling much better than when we went in.  Slightly better, but no firm plan in place just yet. No firm decision about where to go from here. 

In the meantime, George is going to file for short term disability in order to concentrate more on his personal well-being.  Physically he tires readily and though he has been back to work for eight months, it exhausts him.  Workplace morale is also fairly low and that factors into his mental and emotional well-being.  By taking work out of the picture, he will be more able to handle his health in all aspects.  He has decided to attempt to eat much healthier, cutting out much meat and eating mostly fruits and vegetables.  He has read that a vegetarian diet does help cut down cancer cells/growth.  He will have plenty of time to explore his options about healthy eating habits and make some changes.  As he says, “I have a choice here.  If eating vegetarian helps prolong my life, I will have to do it.” 

Today we also had a chance to meet up with another “walking miracle”, a friend of our who has seen more hospital time over the past 20 months.  In early 2014 he was in the hospital and/or rehab for about 3 months with heart issues and the like.  While we were at Good Sam hospital, he was also there for a few days so we got to visit with him there.  He recently underwent a very long brain surgery.  Today, we visited with him at the store that he and his wife owns.  Though there are some memory and speech issues, the fact that he is up and about and able to do sales and help out at the store is a HUGE forward step given that his surgery was within the past few months.  Two miracles between two friends.  A special bond has formed between them.  We give thanks that both George and Rob and alive – that they both have fighting spirits – and that they still have plenty of reasons to smile and laugh in spite of what they have experienced. 

 Note:  I get notes from a Facebook page called "The Whisper of God".  Yesterday and today the prayer and message were SPOT ON for what we need to hear.  Todays read:

Thought for the Day - October 2, 2015

“When we need His help, God does answer our prayers. However, He answers in His way not ours. Be patient as it may take some time for Him to work all things together to answer your prayers. Be aware because sometimes His answer comes in the least expected ways and you don’t want to miss it.”

I hope you have a miraculous day today my friends! – Elmer Laydon

“This is what the Lord, the God of your father David, says: I have heard your prayer and seen your tears; I will heal you.” (2 Kings 20:5 NIV)

So, even though we did not hear what we wanted to hear today, it is God's way of saying, "Not yet, my son."  He has a plan, we will wait to hear it!