The “C” Word - The Next Chapter, Day 6 - Time Table speeds up

Since the CT scan George has had more difficult days with his digestive system.  He had been having nausea and vomiting spells since June 1 (ever 4-7 days) and most were relieved after a few hours.  The night after the CT scan brought on another spell – probably some related to all the barium he had to drink.  Saturday he stayed low key and did not eat at all until dinnertime when he had something light.  He was fine on Sunday and Monday.  Then, on Tuesday it started again.  This time though he had more painful cramping and mostly dry heaves.  After six hours of him going back and forth to the bathroom (thinking he had to go to the bathroom OR feeling the need to vomit) I finally asked, “When is this enough? You’ve ready on the FB page that small bowel obstructions (SBO) can be common and that what you are experiencing appears to be the same type of symptoms.  So when is it time to get this checked out.  It’s been six hours and you are still in a lot of pain and still spending all of your time between the chair/bed and the bathroom.”  He agreed and, at 11:15PM we were off to the ER.  There they did blood work and an X-ray.  The X-ray showed no visible obstructions.  The blood work showed low potassium.  So he was pumped with fluids and given potassium.  Given pain and nausea meds.  We were home about 2 hours after arriving. 

George slept relatively well but after waking still felt a little queasy.  I headed out to find a pharmacy open early so I could fill the prescriptions we’d been given so I could get to work.  By the time that was done it was 9AM.  At 1PM George called and said he thought he needed to go back to the ER.  I left work, headed home and picked him up.  In the waiting room I texted Dr. Bastidas and let him know we were in the ER and that George had been having issues with vomiting and nausea and we were not sure if it was related to the cancer. (Note:  We picked up the CT scan disk and the printed report on Saturday and, on reading it, learned that there were more lesions/tumors than prior test last fall.  A bit disconcerting.)  Dr. Bastidas then stayed in touch with the ER doctor to help figure out the next step.  After 5 hours the choice was (1) be admitted to help keep symptoms controlled or (2) go home and try to keep symptoms controlled.  We let them know that the Zofran did not appear to work very well so they said we could add a suppository to help.  He was discharged about 7PM (the ER was super busy!)  My friend, Judy, had arrived at the hospital just as we were leaving.  She followed us home and stayed with George while I ran to the pharmacy to get the prescription filled. 

George went to bed about 8:45 and I stayed downstairs to just catch my breath.  Dr. Bastidas phoned about 9:45 and I filled him in on what had transpired.  He asked a few questions and said he was on call this weekend if George had problems retaining food and needed to be admitted for IV nutrition.  I let him know that we had an appointment with him at 9:15 and we would see him then. 

George still had a few episodes of vomiting in the early part of the night – the last time being just before midnight.  The suppository finally kicked in and he slept the rest of the night.  In order to ensure that things stayed as calm as possible, I woke him up at 2:30 and 5AM to give him meds.  (The time in between those I could not get back to sleep.  So my sleep was 12-2:30AM and 5:30-7:30AM.)

As we drove to see Dr. B, George said he was actually feeling pretty good.  As we went in to the office, Dr. B was already asking his assistant to cue up a team and asking for it to be done next week!  Whoa! 

Dr. Bastidas sat down with us and reviewed our past history (this was done for the benefit of his intern).  He explained to us the probably cause of George’s current digestive issues.  Apparently there is a tumor at the base of his stomach near the duodena that is causing some restriction as food leaves the stomach.  So, if George has eaten something that temporarily “gets stuck” there, it will cause cramping and vomiting to expel it.  It makes sense that once George has ‘gotten rid” of food that he feels better.  We are not sure why we had such a prolonged period of these spells in the past 2 days because George’s belly should have been emptied sooner. 
Dr. Bastidas also spoke about the different types of chemotherapy available for cancer (most do not apply to PMP).  This, again, was for the benefit of the intern.  He also spoke about a treatment available that looks very promising for certain types of cancers (Lynch syndrome, I think).  This treatment has so much potential the Dr. George Fischer at Stanford decided not to retire because he is so excited.)

We looked over the CT scan with Dr. B and he showed us where there were tumors or possible tumors.  Then we sat down and discussed the “when”.  His biggest concern is that George get enough nutrients to stay healthy.  Given that George was feeling pretty good today, the decision was made to use meds and diet to try to keep George comfortable for a few weeks.  Dr. B will be gone from 7/14-7/18 so surgery would need to be before or after that.  Given that there can be complications and we really want him to be around after surgery, we decided on the week of July 18. (Note: Date is 7/20/16)   By doing this we can do all the things we have planned over the next few weeks.  First, I need to be at work next week as one staff is out on vacation and our staffing is already low.  Second, we have a planned meeting of some local PMP survivors in Stockton on July 9^th.  (Coming from Sacramento, Stockton and Dublin) We really want to have some personal connection with others because people with other cancers cannot relate to what they have gone through.  July 9^th also happens to be George’s birthday.  The next day we will get the twins who will be with us for a week to attend VBS and hang out with George (aka Poppy).  They are looking forward to coming for the week and Poppy is looking forward to having them here. 

Now, things are moving full speed ahead.  Part of us is reeling from the fact that the surgery date had to be moved so close given that George now has symptoms of the disease taking hold. (Note:  This is the first time he has ever been symptomatic in the entire time he has had the cancer.)  We had hoped to make it through most of the summer and maybe get away for a short bit.  Instead, we will enjoy as much as we can the next few weeks.  Although relieved to find out that the cancer has not attacked the liver, kidney, etc. and is still contained to the outside of the organs, the prospect of having surgery happen in under three weeks is cause for some anxiety.  The surgery will still take at least the same amount of time as the first one (7-8 hours) because the doctor has to “undo” some of the connections in order to adequately get to the tumors and ensure that the areas are as clean as possible.  The HIPEC team will be available and, as long as he can remove all visible tumors, will proceed.  For me, that is the most anxious part – waiting to hear the “Go” of “No Go” a few hours after surgery has begun.  I pray that we once again get the “Go” to proceed.

Our battle against this dread disease starts up again.  Our faith remains strong.  Our prayer warriors have begun to do battle with us.  We are so grateful for the love and support that pours out.  No doubt the prayers led us back to the ER where a doctor knew to give us just that extra “boost” in meds to alleviate the GI spells.  (She even called this afternoon to check in with us.  That’s a first!)  Grateful to have the best surgeon (in our eyes) on our side.
Photo below was of our recent "adventure" day trip to Monterey (actually were only there for 2 hours - basically ate and then found this shop).  The "poop" emoji is popular with PMP folk - because most of them have lost portions of their bowels during the MOAS (mother of all surgeries) and thus this is an issue for them.  I look forward to many, many more smiles like this once we get through this surgery and are on the recovery side of things.

The “C” Word - The Next Chapter, Day 1 - CT Scan completed

Today was the CT scan which will begin the process for the next surgery.  George awoke early to start drinking his “banana smoothie” aka Barium. 

On the way to the hospital I inquired as to how he was doing.  He looked fairly calm.  This is the easy part.  The hard part is waiting for the next 6 days until our appointment with the surgeon.  Until that meeting, there will be some level of anxiety as he fears what the tests will show. 

This being the “easy” part – was not so easy.  George was late being escorted back to the room (and I had told him they would probably make him drink some more barium as so much time had lapsed – and that did happen).  After an hour of waiting I finally went to the counter to ask where he was as the test should only take 10 minutes or so.  A little while longer if they have trouble finding veins.  Apparently that was the case today.  Two nurses, one doctor, an ultrasound machine and 9 sticks later they finally got the IV needle in. 

Ironically, the doctor that they called in to assist was Dr. Wright.  George recognized the name.  This was the doctor that was on duty when he had his needle biopsy for the cancer (before we knew what it was).  He worked at O’Connor hospital at that time.  He is the one that tried to draw off the fluid from his belly but couldn’t because it was so thick.  He is the one that whispered to the nurse off in the corner after the procedure and on his way out of the room patted George on the arm and said “Good luck”.  He did not make us feel very good. 

After our appointment (which took a little over 2 hours from the time we entered for admissions until they were done), we went out for a bite to eat and then home for George to try to get some more sleep.  An hour or two after getting home, George experienced another bout of nausea and vomiting and spent a few hours back and forth to the bathroom.

Note: At a doctor appointment earlier this week we found out that George has anemia.  The nurse practitioner says that we have to figure out the cause and, after telling her about the nausea spells (4 since June 1), she suspects George may have an ulcer.  She put George on Prilosec to see if that will help.  I think we will be seeing the GI doctor sooner than later to ensure this is not an issue going forward. 

We see the surgeon on Thursday, June 30 to start cuing up the next surgery.  

The “C” Word 1 year and 10 months Time to plan for MOAS #2

As I sit here today it seems like forever ago that George underwent the Mother of All Surgeries (MOAS).  But as I look at the date it was exactly 22 months ago that we received the diagnosis that cancer had invaded his belly (and it would be about 2-3 weeks after that when we found out what we were dealing with).  22 months … Just 670 days ago.  In reality, not that long – but it seems as though it is forever ago. 

So much has taken place in those 670 days.  The MOAS surgery – just over 7 hours in length followed by a 16 day stay in the hospital and a subsequent 5 day stay just a few weeks later.  Agonizing months of recovery, countless hours of frustration both for George and for myself.  Just as we thought things were getting better, discovering recurrence (or possible missed tumors from the initial surgery).  More anxiety.  A second scan determined that, indeed, there were 2 or 3 growths and another surgery date was set – but not until after the holidays so we can enjoy them.  But… THEN – a broken neck put that surgery on hold while we figured out what to do for the neck.  A second year of holidays’ spent in a recovery mode of sorts as the neck surgery would not take place until after the holidays. 

More recovery – this one almost more difficult than that the MOAS if that is even possible – for this one involved inability to use his arms for weeks after the surgery.  This one was much more inconvenient for both of us on many levels – physical and emotionally draining. 

And now, the neck is adequately healed and we are able to start the process for scheduling the next surgery.  We went right from the neck surgeons office to Dr. Bastidas’ office across the street and put in the request for a CT scan, the first step in this process.  We hope this next surgery will be more successful as there is not as much disease to come out at before.  However, there may be other issues affecting the outcome depending on scar tissue, fissure, etc.  We will not know how these affect the actual surgery – and nor will Dr. Bastidas until he has “eyes” on the belly.  If HIPEC is used again, we are told this surgery will take as long as the first one.  Another long day. … Another long day of anesthesia.

If I have learned anything it is that George has more and more memory issues due to the anesthesia … and also that he will remember very little in the weeks after surgery when he is on pain medication.  I was not aware of how bad this issue was until discovering that there are details he is definitely missing about things that have taken place in recent months- - even though at the time he appeared to be very aware of things.  And, with another round of anesthesia and medications, this scenario could very much be aggravated more than before as the effect is cumulative.  I do not like this, I do not like this at all. 

If there is one “silver lining” in this journey, it is the fact that the George and Rosemary finally determined that it was time to place their mom in assisted living.  Throughout the course of the past two years, even though we have had caregivers or daycare for parts of the days during the week, after hours and weekend care had fallen to me.  During George’s “good months” it was not a huge issue (just inconvenient for us to be able to make any spur of the moment plans), but during the hard times it has meant trying to give BOTH of them the care they need and that was sometimes difficult.  While Rosemary was available to fill in when needed, she also suffers from physical issues and her ability to care for mom is compromised.  This move for mom has lifted such a burden from me that I could physically FEEL freedom.  We are free to roam about and do as we please at least for a few short months until the next surgery.  I should say that although we now HAVE that ability, the reality is that any “adventures” we do take are limited to what George is able to handle.  His stamina is quite low – and belly issues can crop up without notice – so no big trips are planned during this time.  We do hope to take some short weekend jaunts or daytime excursions when we can. 

George is already experiencing pre-scan anxiety, or scanxiety as some of the others with this disease will say.  When he reads others stories online, some bring comfort and others cast doubt about the success rate of this horrible cancer.  George’s is the less aggressive form which is a good thing.  But the more surgeries done, the more organs that are removed, the less the quality of life.  We pray that the “removal” list remains slim this second time around. 

So now – the countdown begins – the countdown to the next surgery.  I pray every day for George to find peace within himself and that he try not to let the worry get the best of him.  I pray that these next few months bring renewed strength in preparation for surgery, renewed resolve to beat this cancer.  God IS on our side!  (and a whole lotta people, too!)