Out of the Hospital Jan 19 2019

He’s home! David is out of the hospital once again. Here’s a quick recap of the last couple days.

Ok, so you know we left Yuma Thursday, in a rather mad dash to get to San Diego before fever and chills and vomiting got severe. We were in the new car so I thought to bring along my own style “barf bags” and fortunately they were not needed. We went to ER, played the waiting game and around midnight David finally got a room. This was a nice room, a sort of lounger chair, a two-seater bench chair and 2 usual chairs. Made it much nicer for me to hang out.

They did a lot of blood work and tests, one test he hadn’t had before. So again, the poor guy is on a liquid diet, he who for sure should be having more than just liquids for nourishment. Rather than all the back and forth we went through, here’s what I took away as the bottom line. This infection was his gall bladder. If it had been anybody else, they most likely would have removed it. But David’s background (scar tissue and cancer) doesn’t make him a good candidate. Surgeon was to consult with other surgeons and it was recommended that we schedule a 40-minute consult appointment to talk with a surgeon. There is also some concern that cutting someone open can spread the cancer. However, Gall bladder surgery is done by laparoscopy these days but with David, that might run into trouble and they’d have to then open him up. I do like that everyone seems to consult with others and make the best-informed decision/suggestion that they can.

So it seems that perhaps the tumor is pressing on different organs and ducts and this causes a blockage so bile backs up and makes a nice place for infection to start. Will this happen again – Yes. Maybe palliative surgery at some point, this would just be to reduce the size of the tumor. That would help with both pain and room for “everybody”. That’s my take.

David is once again feeling good; even says he is hungry this morning. He has his dose of antibiotics which have their own side effects to take over the next 10 days. Ok, lets go drive and learn that new car.

Thanks everyone for reading and your comments. What I need is someone to set me up to send updates out to all my non FB friends. This is such a great way to get interesting news out all at once! Well, its interesting to me… hugs to all

Back to ER and San Diego

Another er visit. January 17 2019 This is becoming way too often an occurrence. Poor David, doing blood draws is not pleasant, eel actually, the phone for the iv was the problem. David's Veins have scar tissue. From all the labs prior to chemo and all the needle stabs with chemo. Finally she got enough blood for the culture and then able to hang fluids and antibiotics. See how I'm getting the lingo!
When we finally got moved into an er room it was very cold. Admission fellow commented on it and brought both of us a warm blanket. Nice. It is now hours later and unfortunately the blanket had long since cooled.
Ultra sound; xrays; antibiotics; morphine did l leave anything out? Oh, there he goes again, ultra sound on the expensive machine downstairs, saw something they wanted to further investigate. I think that's what was said or implied. My feet are cold and I'm tired and hungry. I just had a snack bar. The cafeteria is closed, snacks only. They are going to admit David for observation; culture takes 24 hours. I hope I can find the new car in the dark, hope it's not raining and that I can unlock the car. Bummer that we do not have the garage door opener, have to walk down the front sidewalk rather than through the short, covered breezeway. Please, dear sister, bring your garage door opener so that you and I can set up the built in opener in the rear view mirror. It'll be nice once we figure it out. (That reminds me, better take the garage door openers out of motorhome and Honda before they are sold).
Friday, doing a hyda(?) scan over gal bladder and liver. His white blood cells are high count but liver and bilirubin numbers are good. That indicates tube not blocked, hence the special test. So I don't know what's going on but wanted to update everyone. And it's the weekend so…
Update on new car, I figured out how to adjust the mirrors, unlock first, duh. Barb, sister, and I tried the manual, you tube and the phone, no go on setting up garage door opener. And I took a picture of error message that I plan to take over to Hyundai for them to explain/fix.
Whew, I'm exhausted.

January 2019

On Monday January 7 2019 we had appointment with the radiologist, it's been about 6 months since we have seen him. This related to the study David was in, higher doses of radiation in targeted areas.
Out of 28 people in the study David is the only one with bile duct problems. And David has had an unusual number of problems with the stints. Stints are used in bile duct cancer; liver and pancreatic. The reason doctor didn't tell us about this problem possibility is because he didn't know/expect this.
I did express my concerns and frustration about the current quality of life (as in not). He understood, said all the right things and I felt better for saying it. I also understand more. Asked if our coming in doing survey etc does any good. Yes the more they have to look at helps with compiling data and results of different treatment etc.
Pretty much agreed with the other doctors opinions. I'd say findings but there was no definitive findings and he thought that too.
Another comment on chemo was that can stop the disease but it comes back, whereas radiation is more likely to really stop the progression. So maybe the radiation did allow david to live longer at this unexpected side effect, clogging bile duct stints, which may sort itself out. The structure is most likely due to radiation scarring (we can deal with that), which is a better strictures issue than from cancer tumor.
I left this appointment with more acceptance than the oncology appointment, maybe just more time to digest or I just like radiologist doctor’s bedside manner better!
Make a note to Follow up on the suggestion to get physical therapy for recent multiple hospital stays, muscle atrophy, etc. Also unfortunately David's appetite has again taken a vacation. He really tries to eat but just can't. I can not at all relate to this! We know the suggestion about eating small meals often and some better choices to make but none of this is working. He's been given an iron supplement which may help with his energy, however, there are so many restrictions on when to take it that I don't think he's getting the dose he needs. That's a little complicated but we’ll get it worked out.
Meanwhile, we're in Yuma and finally bought the new car we'd been thinking about. I said let's just stop for a test drive. I really should have known better, no “ testing” was involved! Hyundai Santa Fe with so many bells and whistles that I spend evenings reading the manuals I won't get taken over by the machine and so far Santa Fe is ahead! Along with the fun purchase comes the underlying plan to sell the motor home and faithful Honda tow car. Time for another major change, we've rv'd for 30 years. It's been a great run. Wouldn't have missed it for the world, no regrets, lots of great memories.
Stay tuned for the next great adventure, whatever it may be.

First doctor appointment of 2019

This was also our first meeting with David’s new oncologist. We both were very pleased. She really was on top of David’s condition(s). In fact, before she came into the room, she called and consulted with David’s GI doctor just to make sure they were on the same page. And they were. She was aware of David’s hospital stay and procedure in Yuma. Best of all, the details were available for her to review. Apparently, Kaiser and Yuma have the same computer provider (that’s probably not the right term, computer program?) as well as UCSD so all have the same complete information. I think that is great.

Cross communication, reminds me of our days traveling. If we wanted to get some blood work done, we had to call and get orders faxed to our current location, after we first got a Kaiser member number for that area. Once we got a member number it’s good forever. Kaiser is in several states and we probably have a number for all of them (except Hawaii, didn’t drive to that state!) Plus, we carried paperwork. Its nice now with computers that so much is automated and/or linked together. Makes it easier to keep track of things and share as needed.

Back to the doctor. They are all stumped with David. Even she repeated that when David started chemo in August 2016, they would have given him a 3 – 6-month prognosis based on what they see. He is still an outlier (not within normal ranges)! The other common thought is about his stricture in his bile duct, maybe from tumor, maybe from radiation scar tissue. Difficult to tell. An up note, his stricture is long, which for some reason is a good sign, indicating scar tissue rather than cancer.

Here is some bile duct information. The biliary tract is the drainage system for gall bladder, pancreas and liver. Biliary tract blockages are common for pancreatic cancer patients.

Ran some more lab tests to be sure some of the outrageous numbers from Yuma hospital emergency admittance and ERCP/stint replacement had continued to fall back to the normal range. And based on a couple of the results we have seen, we think so. (that’s what happens when the patients get the lab results and do their own diagnosis!)

Speaking of Yuma, we got the hospital bill. It’s like over $40,000 for a 3 day stay. Ridiculous. Looking at it and the itemized items is almost like a joke. There is no way that it could be “real” costs. I don’t want to get into a discussion about medical care or costs but couldn’t resist sharing. By the way, our share was $570. I don’t know what the San Diego total hospital charges were and I’m not going to check.

Upcoming is an appointment with UCSD radiation doc, the ongoing follow up from the radiation trial David was in. I’m sure I’ll have something to post from that visit. Meanwhile, carry on folks! Have fun and do things you enjoy. Do them today!