Ultra Sound Day

Today we headed off to the GI facility off Garfield for David’s scheduled procedure. Before we headed out, David shaved his arms and hands and upper chest (wonder if I’m supposed to tell). He is so tired of having tape and monitors ripped off, pulling hairs, ouch, and leaving behind sticky residue. (and then the tape/needle didn’t go into any of those spots!)

Since he couldn’t have any food after midnight, I try to be thoughtful and not eat in front of him. I knew there was a small café that closed at 2 so I could get a bit to eat there. That didn’t quite work out. By the time he was checked in and I went out to walk and eat it was 1:30. Oh, food is only served until 1:30. Great so I only got a small prepared snack and went outside to sit in the comfy seats to eat and relax since it’d be closing soon. Who said it was to be 70 degrees. It was cold. I did stay out for awhile because there was a noisy kidlit in the waiting room. If it had been a little warmer, would have been nice. I finally went to the car to close my eyes for a few moments. It was about 90 minutes and got the call that David was ready.

Things we hadn’t heard before. When David was originally diagnosed, it was stage 4 cancer, the tumor in his pancreas was already in arteries. Incurable and inoperable, which is another reason PanCAN (Purple Stride #wagehope) works for funding for early detection. Because usually this late, is it.

Today the doctor felt there was basically no change since his first ERCP. This is unheard of and the doctor could only shake his head and say how pleased he was to see David, it’s been a miraculous nearly 2 ½ years since detection. He really did seem happy to meet both of us again, after such a long time.

He did three things today, looked; biopsy; removed the plastic stent and replaced with a metal stent. My heart dropped upon hearing about the metal stent. My understanding was this was a last stage effort and it could not be removed/replaced and it will eventually clog (clogs less than the plastic and lasts longer). The doctor said today, metal stents can be removed and he told David that they could even insert a smaller stent into the current one. I don’t know if this was to reassure us or just what. The toss up is David can not continue to get the infections that turn sepsis, this is very dangerous and in this case more serious than the cancer.

I asked about the radiation, would it have been better not to do it. Since he is the doctor that inserted the fiduciary (wait, that’s financial, was it fiducial) seeds for the radiation, he said he would have voiced his objects at the time. It is really hard to say. There is no way to know what David’s situation would be if he hadn’t had the radiation. And while these recent problems of the bile duct are due to scar tissue from radiation, who’s to say what positive role the radiation played.

Basically, he has no opinion on David. He is not following any “normal” course of pancreatic cancer. Hard to make recommendations when he has survived beyond the anticipated course, as other cases have gone. It was almost fun to see how perplexed the doctor is.

Right now, David is sleeping. He is on liquid until breakfast. He has asked me 4 times when can he eat. He’s still a little out of it. I made a stop at the store to get some jello and broth. They weren’t clear about him taking his diabetic medication so I’ve made an executive decision, don’t take any, he’s not eating. I’m not going that route again! I’ll make sure he checks his blood sugar a couple times tonight.

My feelings, a little sad and depressed but also forever optimistic. And because David loves baseball, here’s my analogy. While it seems David is into, not the final innings, but extra innings, and I’m not sure how many inning’s this game is going to go. I’m going to enjoy every extra inning play!

Please keep up the prayers, because frankly, that’s the only explanation for this phenomenal existence.

911 works in Yuma too

Hey what would it be without paramedics, fire engines and a crowd in the house with medical equipment. It is true, our tiny park model is much more crowded than the family home in San Diego. Efficient and caring EMT appear across state lines and so do the neighbors. I’m getting really good at using the phone, weather it be for official personal, a neighbor to search for sugar soda or just to have a friend hold my hand through the unveiling ordeal.

Once again, no longer a one-time incident, David’s blood sugar went very low and after the usual fixes, was not going back up to normal or even near normal levels. It was early, only after 11pm when David woke up in a sweat and knew his sugar was low. It was 54 (treat lows at 70). I wasn’t too concerned, except this was very early, usually its around 2 am. I gave him a juice drink and I could tell it wasn’t doing anything so I gave him some sugar water. He was not staying alert and seemed to be a little confused. I didn’t delay this time, I just dialed 911. I have now learned that I need to tell the operator that I’m in the county so she/he will transfer me to Rural Metro. I don’t know my address – only the park name, which isn’t a problem when you talk to Rural Metro. They dispatched right away while she asked me questions.

I’m checking on David and he is out. I was also concerned because his temp was only 92.1. Later no one seemed concerned about that but… Anyway, I am now dressed and got out id and Medicare card and turn on the porch light. Finally, they arrived. His BS (blood sugar) is down (44). They are ordering things for me to give him, no we don’t have any orange juice, no we don’t have any real sodas. We have now gone through all the sugar dosing things we do have on hand. Even the EMTs are looking in fridge and cupboards. One young man even looked in one of my semi packed bags (put together previous emergency) and found some crackers. I called our neighbors (well, they said next time I was to call) to see if they had any juice, nope. They then went racing to the club house to the soda machine, not working! Then to the next park, not working. Finally got their flashlight and raided another neighbors shed for a real soda. Looking back we have all laughed at what a crazy scene this must have been. And I can’t thank them enough. It also helped having them with me.

They asked if David wanted to go to the hospital and no surprise he declined. After all this sugar and some carbs, finally BS is up to 160. But not before it went down to 44 and moved very slowly. We theorize that they kept his sugar so high in the hospital and he worked so hard to get it back under control that the food, exercise, insulin, was out of whack. It is a very tricky formula as any of you diabetics know.

Friday morning, David feels great! Of course he had immediately fallen back asleep. Later, we get a call from the GI doctor who is rather upset that David wants to cancel his procedure (Endoscopy ultrasound) on the 21^st. There had apparently been miscommunication and we had been getting frustrated. We understood the procedure, just wanted to be sure it could be done so soon after the ERCP with stint replacement. Somehow this question was not getting across. The doctor does not want to delay as he is concerned there are potential cancer cells and this will allow an in-dept look, is it back, has it spread, is it somewhere else.

David’s GP doctor called a little later, apparently GI doc called him too, and basically told David to go ahead with the procedure. We are happy that everyone seems to be back in the loop. It probably is best we move forward. That means that just after we told everyone we’d be in Yuma for longer and we’d ordered our mail to be delivered, that the plans have been changed. I can’t even think about the tests and potential results. So this report ends here with a happy birthday wish for David (on the 16^th – he’s baking his own cake); Merry Christmas greetings to all and Happy New Year wishes.

David loves hospital food

David loves hospital food!

Well he must, this is his 3^rd visit since September. Although he has expanded out of the Kaiser system to explore Yuma Regional Medical Center. Tuesday he wasn’t feeling quite as perky as he had. By the evening he was almost nodding off in his chair and the dreaded chills began. Panic mode, took me back to moments on the ship. So I got out my trusty thermometer and yep, he was running a fever. The extreme shaking from the chills didn’t lats but a few minutes, I checked his temp over the next hour, it went higher, then lower, then back up. So I called the 24 hour nurse, got the number speed dialed. Well, I guess all phone numbers these days are in essence speed dialed! After the usual useless 20 questions she said, go to ER and if he feels worse, pull over and call 911. Yikes, so off we went. Cause: fever; vomit; high blood sugar.

Now to continue the long story, finally found a parking spot, I’d dropped David off at the ER entrance. He got in quickly and we began with another version of the useless 20 questions. I called a friend because I wasn’t up for sitting, waiting alone this time. She was great company, especially when they wheeled David off for a CT scan. Being left in that now big empty space gives me the willies and allows for extreme movie making. Bottom line, another hospital stay check in which for some reason takes hours and never gets accomplished until after midnight. I mean, are people leaving their hospital beds in the wee hours so now a room is available for David? I don’t think so. Perplexing.

David’s arms are the latest in pincushions, because of all the blood draws and because there is always one attempt that goes awry and a bruise is left for no reason. Wednesday mostly a waiting game. We did meet Dr Miller who will do the procedure Thursday here in Yuma. He does not want us to drive back to San Diego, concerned about David’s fever going too high or other complicated issues. David has an ERCP scheduled for Dec 21 in san diego but guess we don’t need that now. However, that was to be a sonogram to look for cancer cells and any other issues. Tomorrow Dr Miller is just removing and replacing the stints, no explorations. He says the sonograms are only done by a few doctors. He does about 4,000 stints a year. He explained that each body is different and there are 3 components that work together and cause the clogging. It was funny as two were big strange words and even he couldn’t remember the name of the third. All said in such a way that I was not concerned, only amused. So maybe David’s don’t work well together or work too well and the stints clog quickly. He also explained how he will look at the stricture to determine the length of the stint needed. This was reassuring as I had actually wondered about how the length was determined and I understood I explanation.

This has been another maddening, scary ordeal. David was fine then suddenly he wasn’t (if in doubt look our picture at the Yuma Christmas tree lighting.) Even the ER doctor said David looked pretty good but did not look good on paper. I was going to put some of the alarming numbers in this but decided I was too lazy to properly record them. It was helpful that Kaiser sent over previous stats for comparison.

The story’s not over and may it go on for a long time yet. Trusting that all will go well tomorrow. Not sure what our plans will be however it goes. Again, we both so appreciate our circle of loving and caring family and friends. For sure you have all smoothed out the bumps in the road of life.

Friday, December 7, 2018, yesterdays procedure went well. Waiting now on cultures and real food. He’s only had liquids since he arrived. I on the other hand am having food. Went with the neighbors yesterday to our park welcome back chicken, beans and potato salad. And an ice cream bar!

over and out

Happy Thanksgiving

Yes, it is a happy thanksgiving. David is home, again! We will be joining family for a meal later today. We have a lot to be grateful for, family, friends, David is still with us, etc

Here is a brief recap of our latest events. (maybe not so brief?)

September 19^th David went to the ER because he was yellow and in pain. This turned out to be due to blocked bile duct, actually they called it a stricture. Plastic stint was placed via endoscopy on Monday, September 24.

David was feeling pretty good and was able to participate in the Purple Stride walk October 7^th. He didn’t walk as far as he had hoped but was able to walk and we enjoyed a couple days in the RV at the nearby RV park.

We then, after labs to confirm the stint was “working”, we packed our bags and flew to Montreal Canada to begin what was expected to be a long cruise including Halloween, birthday celebrations for me and Thanksgiving. Instead we left the ship, at the “suggestion” of the ship doctor, in Tampa and flew back to San Diego. This turned into another ER visit on Halloween, October 31 Wednesday. So our costumes and my spider earrings got this year off as I didn’t think to dress up to go to ER. This visit led to a hospital stay which included replacing the blocked/clogged stint with two stints, in a sort of rush, emergency procedure. 4 days and David is released.

Fast forward to November 19^th, David’s blood sugar is dangerously low and, in the afternoon, not wee hours of the morning when it does occasionally go low. I helped David do the usual steps to bring his blood sugar up. It’s not moving up, started at 39 (70 is low) only moved up to 41. A bit of panic sets in and I can tell David is affected by this low sugar. He usually breaks out in a sweat and had already changed his T-shirt. I am watching the T-shirt turn wet. If I weren’t in a panic, it would be rather interesting to watch it happen before my eyes. I call the 24-hour nurse, do her remedies as suggested and it is only moving up to 46. A bit of time has gone by and David has checked his blood sugar 3 or 4 times. The nurse now calmly says, hang up and dial 911. I followed her direction, not quite as calmly!

It seemed like it took forever for the big fire truck to arrive, it’s now dark. It’s always fun to see the big strong, handsome, young men coming and a bit of relief. The ambulance arrived and it never seemed to be a question of if he should go to the hospital, only which hospital. And off he goes.

A couple of neighbors came out and the neighbor next door kindly asked if I wanted him to drive me or follow. His wife was concerned which was very nice. In fact, these neighbors had taken my mom to the hospital many years ago when my dad was given his own ambulance ride. There is something about being in the same neighborhood for almost 40 years.

Was it sepsis again? Was it C-diff (until this was ruled out, everyone had to “gown up” when going into the room, isolation was not fun). Any infection or reaction to the diabetes medication that he’s been taking for years. A result of the weight loss, dehydration, diarrhea or did David just want some more of that hospital food. Many speculations, no diagnosis, 3 days later David is released. My sister went along with me to “bail” him out.

Thanksgiving was a lovely day spent with some family and enjoyed good food and company. Even my 97 year old father in law was able to attend.

Monday is the follow up appointment. I have my own theories. Thanks to everyone who is trudging this path with us. Food and distractions and just knowing you are all there for whatever I/we may need gives me great comfort. Stop and smell the roses and don’t sweat the small stuff (it’s all small stuff).

Home from the Hospital

David, the rebound King! Once again, he was overcome with complications that should have been devasting and deadly, while this was certainly hair raising, it seems to have had a good outcome. The diagnosis of UTI on the ship, which may or may not have been accurate, ultimately, he got sepsis. His biliary stent was plugged and did cause bacteria to enter in his blood. Not to forget that this was all very painful. The stent placed on September 24 was removed and replaced with two side by side biliary stents November 3, 2018. We know these plastic stents must be removed and replaced but usual span is 10-12 weeks.

Here are specifics we learned at the doctor appointment this morning, November 5, 2018.  In case you didn’t think he really wasn’t eating, when we got on the ship, David weighed 150 lbs, down from his 160-average weight, today weight 143!  Sepsis without acute organ dysfunction; cholangitis [fewer than 200,000 cases per year!]. Through this course of antibiotics any sore throat, fever, cold, immediately go to the ER.

That’s about it for the medical side. Now, who wants to come help me (Marilyn) make copies and scans and fill out insurance claims? This tedious job is not for the weak hearted. Besides, along with waiting on David (well, sort of) I am attempting to cook; bake; fuel the car – unknown jobs for me!

Now the bad news. They always do a routine brushing and this time it did not show just scar tissue, the pathologist sees cancer cells, suspicious not certain. This doctor has notified David’s oncologist (“the captain of this team”!) What will happen now is an endoscopy ultra sound which will include biopsy to determine if cancer is there.

Hang in there folks, more will be revealed…

Mr David rallies again

Hooray, for the second time the yellow is gone! David may even be released as early as tomorrow. His first and original stent was the cause of infection. The one stent was replaced with two, side by side, whatever that means. This procedure is usually done at another facility but the doctor came to David yesterday. He completed and immediately went back to the gi/internal facility. That makes me think they were quite concerned with getting the procedure done ASAP.
Still working on eliminate the infection in his blood which is a result of the clogged stent which is, I don't know why.
And how was your week!

Update, in the hospital

Quick update. David has been admitted to the hospital. He has sepsis and needs the bile duct stent replaced. The stent that should last 4 months and has only been in about 4 weeks. That all may or may not be accurate, but that's what I heard.
Now we pay the waiting game of doctor coming to see him and getting something scheduled.
He is sleeping a lot. Feel free to text him. He has his phone, but doesn't want phone calls in case he is getting some uninterrupted sleep. If you have ever been hospitalized you know how often you get awakened.
Thank you all for caring. By the way this is pancreatic cancer awareness month, spread the word. Wear purple, especially on November 15 th.

51 day cruise ends at 15 days

51 day cruise ends at 15 days

It’s official, we are off the ship and awaiting doctors. That might be a little too dramatic but dramatic is what the majority of the last 15 days have been. And it ain’t over yet.

For just a quick update, after pretty much continuous high fever, lack of appetite, sleep and more sleep, medications, diet changes; David is not yet feeling better. Glad we took the doctors suggestion to disembark in Tampa and fly back to San Diego. Of course that was a long day and thank goodness David did not have any episodes on the flights back!

You can imagine I have been concerned for David which gets multiplied out at sea. His worst day (fever 102.4) was when we were circling Martha’s Vineyard area because the seas and winds were too high to dock. Those conditions along with how to I manage our 4 suitcases and David. I even made a mental plan of what to leave behind. It gave me lots to think about on my sleepless nights!

Wasn’t it a great treat that even though we missed two ports because of weather, we got a bonus of overnight in New York. And even better David felt up to the last-minute tour the ship provided to see New York by night. It was amazing. Another bonus was that David was able to get off the ship in the two ports we had not yet been to, New York and Charleston SC, even though it wasn’t for long.

The other nice event was our day of scenic sailing the St Lawrence River (Canada), the shore lines were beautiful with the trees changing and the cottages along the shore. Something I had wanted to see.

David’s chills and fevers continue, as soon as we know something, I’ll let everyone know as best I can. We are in communication with doctors and labs, awaiting results. Not to mention, filling out forms and paperwork, we'll see if this trip insurance is worth it.

Thank you everyone for all your concern, comments, meals and food drop offs. It means so much to both of us and is very helpful. I can’t tell you how much it means to get a text at just that moment when I want to throw in the towel! Thank You!!

Cruising road bumps or is it rough seas...

Cruise from Montreal to Tampa Florida and beyond.
Almost didn't leave San Diego, midnight shut down. Due to a Ground stop, that's what I understood the gal to say. Tiny little jet in Detroit, another delay leaving. Long wait for the bus, another wait to get off the bus at the pier. Worked out for us as that delay got our bags put directly into cart not waiting on the sidewalk with other masses. Not a good experience with HAL flight and transfer. Leave the day before in the future, plus discovered that going through HAL would have given us quite a reduced room rate.
The next adventure is storm. High seas and high winds were announced along with my favorite, bath bags getting placed at the elevators. I love the rocking and tossing of the boat. I think it reminds me of the days going out to the la Jolla kelp needs with my dad in his small boat. I got to drive the boat while he fished. Loved the rocking and various other adventures.
Later the captain announces that the decision has been made for us, no going to Charlottetown. The port was full, no room for us. He had talked to all ports in the area. I've forgotten the details as another adventure steps in to occupy me.
David hasn't been feeling well. At the main stage show he gets chips and is shaking. We go to the room, he bundled up, warms up and feels ”better”. His temp is 99. Ok. Next night, again the child's and shaking with chattering teeth. Getting a little worried. Temp 100.2. Ok, not good but not  too concerned. We check temp again, maybe half hour or so. Temp is now 102.4, I'm worried. I have the thermometer and ideas about temp from chemo days. I call medical. Nurse says to take Tylenol. Did that. Phone rings, nurse calls back, did you say 100.2, no, 102. Down to medical we go. It is 2am. David, once again gives blood and urine sample. His wbc (white blood count) is elevated and blood in his urine. He is now hooked up to an iv of powerful antibiotic and gets 3 prescriptions. 
I have mentally packed up our cabin and figured what I'd leave behind because I can't manage it all myself. Wonder how he'd be taken any where as we are in the middle of the storm where we are unable to dock or call into port. Big imagination!
Next day. At the moment all seems to be okay. We are still on our cruise! Difficult to get internet connection but will try to keep you all updated.
Port of Boston. We stay on board. Saving energy for Martha's vineyard. We've not been there and want to get off to walk a bit in the little villages. I'll leave out our third visit to medical due to David's diarrhea from the medicines. He says he is feeling better and I think he is, not as much sleeping and we went to the dining room, not just the lido deck for dinner. Main dining room is what I like, several courses, served elegantly.
Surprise, Martha's vineyard will remain unexplored territory. High seas, high winds cancel another port of call. The port is open to the sea and it would be unsafe, especially since it is a tender port (no docking, take little board to the pier). Captain called Rhode island but that port would have pretty much the same sea condition.
Nice resolution. We arrive in New York early and spend the night!
To be continued, see FB for pictures

ERCP procedure day 9/24/18

ERCP procedure day or you’ll wonder where the yellow went, when they fix your fellow with a stent.

Oh, the waiting, it's so hard. I did go get my flu shot and go for a bit of a walk. Too cool to stay out for long. I missed the café, it closed at 2. Nothing else it's around here.

Doctor called me in, drew a picture of what they are going to do, what they could do, and what they might need to do in a couple weeks. Also gave us some worse case outcomes. Pancreatitis 5% chance and other 5%.  Now I feel worse not better and the procedure will be at least 45 minutes and it is running late. Interesting that the jaundice is more a cosmetic issue than anything else. Huh.

He mentioned both the oncologist and radiation and his chief (he had inserted the gold markers before radiation) had discussions. Said more than once sounded like cancer is gone, just scar tissue. Could be underlying cancer that has returned but might be hard to tell. They all think the best case and think it is, scar tissue.

Biopsy result in a week or week and half. That's a timing issue for us. This wasn't mentioned before. Do we care?

Surprise, this stint isn't meant to stay in. It is to be removed and replaced in 10 to 12 weeks. The idea is do this 2 or 3 times and hopefully the duct would be staying open on its own. Didn’t hear this before either. I saw a great picture of David's duct. The void or narrowing was very obvious, per paperwork its 1cm in length of distal CBD stricture.

This stent is plastic which will clog up after time, sometimes a metal stint is used but that's not what you want because that's last ditch, means they have given up on any improvement.

The biopsy (cytology brushing – think pipe cleaner) results will be back in 7 10 days. Even if it's negative there is a possibility cancer could still be hiding. There is another procedure, EUS, suggested to do in a couple weeks. Not sure why/if we'd opt to do this. The EUS would show if any cancer was hiding under the scar tissue and action plan would then be determined.

Another interesting picture was of them draining this backed up bile. It backs up in your liver. It was a dark black looking sludge. Sort of like when you haven't changed your oil in a very long time.

David weight was 146 down from his normal 162. That’s how bad he has been feeling with pain and discomfort that he hasn’t been eating well and maybe body's ability to utilize what food he did eat. (Says Dr M)

Dr Chen said they are seeing this more due to radiation treatment. Assume this means for pancreatic cancer they are doing more radiation, maybe similar to the high intense study David was in. And stated that ER Doctors are trained to see a mass, not think about scar tissue. This is way when we left ER we were thinking there was another mass or growth.

David has been asking me and telling me same thing over and over. So I am writing all this for his clarification! It’s a little funny and a little taxing, I know he can’t help it but...

Now our upcoming cruise, cancel or go? That's our next decision. More discussion needed.

Thank you all for your concern and prayers. Stay tuned for the next adventure.

My Yellow Fellow

This picture was to come at the end. Oh well. It's some of David's Pan CAN San Diego purple stride team members. If you care to join up go to PanCAN.org find the team: Fist Bumpers

If you hadn’t heard Dave has obstructive jaundice. This was a bit alarming. Not anything we were expecting or prepared for. We had finished up our summer rv trip and were back in San Diego for a schedule “3 month” follow up CT. David had done the required labs on Thursday and was feeling his usual pain/discomfort. Sunday evening, I said gosh you look yellow. He said yeah he had noticed it but thought it was just light in the bathroom.

Monday morning I looked deep into his eyes and they were yellow! Ok, taking action. Some phone calls and it was decided that he should go get a full set of labs done. As lab results started coming in and doctors got involved he was instructed to go to ER. In fact, one said he should have gone to ER immediately. Wednesday spent in ER and another set of blood draws along with a CT and sonogram.

After what seemed like a very long time (at least to me who was not getting rolled around from one room to another for procedures) it was determined that David needed a stent placed in his bio duct that was collapsed. This will be done Monday as an outpatient. His bilirubin number was 10 (normal is 1 or less) the doctor that will preform this felt the wait was ok as he had done this procedure with a bilirubin as high as 20.

They asked about pain, only would be able to give him morphine which it sounded like he would have to stay in the hospital for that. So he declined.

We left still a bit concerned because what caused the blockage, was the tumor growing or spreading? More phone calls and consultations. Good news, radiologist believes it is due to the radiation. Oncology doctor called for David’s next appointment and it isn’t needed until December. While we didn’t get the usual talk about what the CT showed we knew from these calls and plans that tumor wise he must still be stable. And Monday’s procedure - ENDOSCOPIC RETROGRADE CHOLANGIOPANCREATOGRAM (ERCP) should give him immediate relief. So we are really excited about that. It would be great if this takes care of the last months of pain and discomfort, and get’s the yellow out!

The plan we had was to get over to our Yuma place after the results or the originally scheduled CT; returning for the October 7, Purple Stride San Diego 2018 walk at De Anza Cove. (If you didn’t know this walk is to raise awareness and funds for pancreatic cancer with the goal to double survival by 2020 PanCAN.org). Now our plans are not firm because there is a risk of bleeding from the procedure and we will probably stay around San Diego for some extra time, just to be sure.

Have a great rest of the weekend!                                   

Travel Thoughts

Perfect travel day: July 6 2018

Yreka California to Eugene Oregon about 220 miles. We could have gone farther but for me this was kind of day, especially after David went low last night I was awake at 2am. After breakfast in the really lot, headed out on hwy 5. Stopped at Rogue River state park/rest area. Took a nice hike/walk along the river trail. It was a busy place. Back at the rig we pulled forward a bit to give more room to others. We then napped which I needed after a mostly awake night. Then we decided to eat lunch before continuing on. More driving. Later stopped at another rest area for a short walk and coffee. We were very close to our planned stop, a place we have been before. It is near the college, by a park with walking/biking paths and a very nice rose garden. One section of the mall parking lot is for rv ers. You check in with security put a pass in your window and are good to go for one or more nights. You can now walk, swim at the small river beach, ride your bike, go to the movie or eat all conveniently right here. It's lovely and restful.

The Good Old Days:

Oh the new world of campers/rv ers, the other day one asked me the best app to use to find a campground. App, my goodness, I remember an entire cupboard dedicated to the various books and maps we used. A couple of large, fast, heavy books that listed campgrounds that listed them by state with various ratings and the legend I had to keep referring to because I couldn't remember the abbreviations for facilities and amenities. I then would add my own notes in what little white space was available. Making and savings favorites meant you turned down the corner of the page! Similar to the old Sears catalog/wish book. I'd circle an item I wanted to find again, then use a bookmark(paper variety) only to have my sister move my bookmarks (wait, maybe I did that to her). That's the old fashioned, non computer method.

Maps, a lot of space tucking all these in someplace and the revolving, if you've never tried to neatly refold a state map, well, you haven't lived. Not to mention the making pins I wouldn’t loss my place as we traveled along unknown roads. The best part was collecting the maps. We stopped at every state welcome center. They usually had nice large parking sometimes water and an rv dump. Going inside to get the state map and browse the brochures arranged by area for things to see and do with a bonus of the few that has free coffee. There was always a helpful volunteer at the counter to offer suggestions along with requesting you to “ sign in” so you're visit would be counted. It was always a nice break in the drive, Igood information and maybe even a place to spend the night. We had favorite we’d go to year after year. Plus I'd need a new state map because by then the old one had been folded and marked up and falling apart. Not as easy as, Hey, Google, but a lot more fun.

Anybody remember or use trip ticks from AAA?

The giant atlas from Wal-Mart was another must have. We always got the one from Wal-Mart because it listed all the Wal-Mart's in the back by state/city. It gave you info as to if it was a super Wal-Mart, and which departments it had, like pharmacy or tire shop. If I recall it might have indicated something about parking because I know we used it to find that over night parking when in route from point a to b. Another large oversize reference “ book”.

Exit Authority then called The Next Exit was a great reference book. It was good for inter state highways but great value as to, you guessed it, what was at the next exit! Gas stations, with or without diesel, restaurant, hotel, campground. No details but which side it was on and listed in red if there was large parking available. This too I marked up in tiny print because of course there wasn't room for my notes. I noted if we stayed the night or the fuel price or maybe even not to take this exit again. It was helpful as to had we better fuel up now because the next station is too far, or is there a campground and do I now need to get out the Good Sam giant book to research camping options. It was a lot of juggling and frustration, I mean fun, trying to make the decision before the exit is upon us!

Ahh, the good ole days….

PanCAN Advocacy Day continued

Even after an early and long day with rain on our way back to the hotel, we decided to go out for a walk after a light dinner. So our Tuesday Advocacy Day continued a little longer.

We stumbled upon the Navy band performing. We missed most of it but were in time to sit down (whew) and enjoy. The voices were wonderful; it was overall a wonderful unexpected event that really topped off the day. You can’t help but be proud to be an American, be a part of the process and end it with men and women in their dress whites, standing tall. Of course it ends with asking members of all branches to stand and be recognized with their service song.

My favorite meeting: Rep Brian Babin DDS with his wonderful cowboy boots and very personable. He is also aware of the 20,000 Escapee RV club members; it was nice we could represent them with our own personal experience. We will be sending in that picture to the Escapee Magazine.

Met Gil, one of the long time survivor advocates, when we first arrived. Saw him just as he was on his way out of DC, how touching for him to expect to see us next year and telling David, now don’t you stand me up. One survivor can say that to another because we know the meaning behind that.

First Class to DC - Advocacy Day

Our first time flying first class begins. Boarding is quick and easy, first on, first two seats and immediate offer of drinks. We got on board with partial cups of coffee so David only asked for water. Tip for future, have an empty hand. Hard to juggle coffee cup, luggage, phone with boarding pass.

Waiting now in Phoenix. I am tired. Still a bit to go. Wrapped in my shawl, they did have a blanket on the plane but my legs and arms were cold. Wear long pants and long sleeves.

I don't sleep well on planes. We arrive in D.C. at 7 a.m., 4 to us. We got to the hotel and the early check in worked! We were in our room before 9. Nice! Napped! Bagel and fruit for breakfast. We then head out to do some exploring. Walked to the Ford theatre where Booth shot Lincoln; museum of aftermath, where there is a 4 story stack of books about Lincoln; next to the Patterson house where he died. Interesting and nice walk. 

Returned to hotel to, yes, nap more then check in for PanCAN advocacy. Our schedule and tips for our meetings and follow up thank you's, make me feel like I have a big test at school and didn't study! Add to this tomorrow starts at 7a.m. est

There is a lot of purple being worn. A lot of positive enthusiastic people. 130 survivors this year, only 100 last year. When this began a few years ago, there were only 14 survivors, progress.

Tuesday morning. Subway to the capitol. 

We split into groups by State and then later by district within the state. There is a lot of security. Gates and barricades in the roads that must be lowered and then raised; large “flower pots” that are full of gravel; and of course we all must go through metal detectors and have our bags screened. You can see various entrances to buildings that are permanently boarded up, so to speak. I’m not complaining but noticing how things have had to change. Fortunately the old subway tunnels are now the “hallways” to walk from one building to another and as long as you stay in the Senate or the House, you do not have to be rescreened. This all involves a lot of walking. One of our folks recorded 12,000 steps at the end of the day. With advocates from all 50 states (about 600 of us) we have a lot of meetings scheduled. It was an emotional and enlightening day.

CT results

The results are in – “CT looks really, really good!” The mass lesion in the pancreas is getting smaller but still around major arteries; no evidence of metastasizing. Continue to watch and wait. Unfortunately the GI issues are side effects from the radiation and to continue symptom management with over the counter medicines. This is quite common side effect, bowel mobility is compromised and there is no magic pill. David is pretty uncomfortable but good to know the back pain is not from the tumor. This had been a concern.

So it’s a great day! Enjoy!

Purple Light

5/7/18 – Routine, 3 month doctor trip to San Diego coincided with Two special events happening on the same day, one early day, one evening and they were less than 4 miles apart. The first at Harbor Island with the second on Shelter Island. It was an opportunity to make good use of our little motorhome, why not take it and then we’d be able to relax all afternoon without making an 18 mile drive to the house and back again. Parking at Harbor Island would be difficult but there was lots of room at Shelter Island so we parked there and took Lyft to the Harbor Island event. It was a beautiful setting and celebration of life for a dear friend’s mother. We had met her, her mom and her sister many years ago when we got involved with San Diego Basset Hound Rescue. As the sisters were sharing and things were said, it was impossible not to be remembering my own mother and my sister. Well of course the bassets too! Those basset hounds, what a lot of joy they brought.

There was also a great layout of yummy food. We all talked about what a nice place this was, on the water and all. So of course David thought it would be nice for his memorial but he wants it now – so he can attend. Hmmm, that sounds like David and he might be on to something.

We were going to just Lyft back but friends offered to return us to the rig and as a bonus they got a tiny house tour. We then had the afternoon to relax, change clothes, nap, eat dinner and attend event number 2, Purple Light. We were across from the port terminal so while enjoying our dinner we watched the Disney cruise boat head out to sea.

 Purple Light gathers survivors, families, and friends who have felt the impact of pancreatic cancer. This event hosts a ceremony to honor survivors and those who have been lost to pancreatic cancer by cracking purple glow sticks for each individual to create a powerful message of solidarity and to remember you are not alone. The purpose of this event is to ignite hope and remind of us why we fight.

It was a small gathering but I am glad we went. There was great food (invite said light refreshments but this was not my idea of light – giant burritos!). It was good to interact with others involved by the same cause. One speaker shared her story. They then handed out white roses, first to the survivors, David being one, and then to others who had lost someone to this disease. As these folks took a rose they shared a brief line or two about the person they’d lost, the common share was how quickly this disease proves fatal after diagnosis. The good news was that life expectancy has gone from 6% to 9% over 5 years. That’s why the goal to double it by 2020.

When we arrived we were all given a glow stick. Although it was not quite dark enough for full effect, this was a very moving recognition of people. As the persons’ name was read, those that were there in memory or honor of that person were to crack their glow stick (which activated the light) and hold it high. It was very mixed feelings when they got to the survivors and they read David’s name and we both cracked our glow stick.

It’s always good to share with others in similar situations. There were some who this was their first event and many who had been to this and other Pan Can events. Some who had done the walk in October and others who were going to. And we met a gal (Angie) who will be going to the Pan Can Advocacy day in Washington DC in June, as will we.

David’s next CT scan – May 28.

Caribbean Cruise March 2018

Great cruise! If you have FB you have seen some pictures. Not to brag or bore, we did so much that I can’t even remember it all. I did not take my computer so did not make a running commentary. Really try to reduce all we take but still take too much. I took a picture of clothes that we sent to the laundry so that if any were lost I could show a photo rather than describe and so I’d know what I actually wore. The laundry is very expensive but they give you a smallish bag that for $20 all you can stuff. We are really good at stuffing in a lot!

All went well and we did a couple very different excursions that were quite exciting. One was a bus and flight to Tikel ruins. The ruins were really something to see. We have seen Mayan ruins before but these were quite extensive and several had stairs built beside them so you could climb up and really get a view. Many stairs! David went up two but did not join me on the third. He does not have his strength and energy – yet. The plane was an 18 passenger, there were 17 of us. That’s all I know about the plane. We all got a cute little snack pack that contained a juice box that comes in handy, more on that later.

The other very different thing we did was Helmet Dive. This is a helmet that fits over your head and sits on your shoulders, you do not get your hair or face wet. It is really neat. We walked into the ocean from the beach, not an easy walk. Not a lot to see but the experience was great. I was wearing very bright orange swim shorts and those towards the back where the stirred up sand obstructed vision, followed my orange glow.

Couple of ports we did a lot of walking, like 7 miles worth. David had his step counter on. I was glad for the exercise but again David slowed and thank goodness we had days to rest in between. Now about the juice box: One of the days must have been too much exercise because David’s blood sugar went too low one night. Luckily I had the juice boxes from our flight so he had half of one (well he should have had half but he drank most of it). Hard to believe with all the food available that David was lacking carbs! LOL

It was a wonderful trip we feel blessed to have been able to go on another fun journey. I do feel bad tho because David feels discomfort pretty much daily. Either the radiation burned something it shouldn’t have or the tumor is interfering with the pancreas workings, he is bothered with bloat, etc. At this point, doctor says just to use OTC meds, which do help. Guess it’s better than the alternative!

Don’t forget to smile and enjoy the moments and go give somebody a hug!

Good News

March 1, 2018: Good News! Doctor says David’s tumor is a little smaller than the last CT scan. This is an encouraging finding. Yep, I’d say so. We will now be literally and figuratively flying to board that cruise ship, for sail-a-bration! Bon Voyage friends.

Upcoming activities

While awaiting the results of Monday’s CT scan we are busy making plans. First is our upcoming cruise. We drive to phoenix Friday to fly out Saturday to Tampa where we will board our ship for a 21 day Caribbean cruise. We will have a couple repeat ports and a lot of new ones. We are looking forward to the cruise.

Next excitement on the agaenda is June 18-19 for National Pancreatic Cancer Advocacy Day.

Advocacy Day is the largest national gathering of the pancreatic cancer community. It is a rewarding, impactful and powerful event one that wouldn’t be possible without people like you traveling from across the country to Demand Better. For Patients. For Survival.

Also, just got the notice of the annual Purple Stride Walk for PanCan. It is October 9^th. Be ready to hear from us to join us in the walk. It turned out to be a fun walk last year. Some of you joined us at our rig after the walk for snacks and few more “purple” pictures. Let’s do it again. We will again plan to spend the night before at the campground. 

Thursday we should get the results of the CT done Monday. 

Small price to pay

Here’s the latest doctor visit (January 22, 2018) update. This was with Dr Murphy, radiology at UCSD where David was/is part of a study involving 30 patients. Per doctor, a couple of the patients are showing good responses – oh, and David is one of them! Doctor is cautiously optimistic. There is a slightly negative side however. David has been experiencing a bit of discomfort with bloating, indigestion, gas, etc. Unfortunately it may be due to the tumor or radiation upsetting the normal digestion process. The “purple” pill helps a bit and so does gasx pills. I had noticed that David suddenly seemed to have a cute little pot belly but had not gained weight. Sure enough, when thumping his tummy, it sounds just like a ripe watermelon. That’s due to being filled with air. Ok, I guess we say this is a small price to pay. If it should get worse, there is something they would do to see if it might be from the radiation. But honestly I sort of stopped listening, it didn’t sound fun and I don’t think there was any resolution. I plan to not think about it.

The next CT will be later in February. We have planned an eastern carribean cruise a few days after the scan. Change or no change, we will go on the cruise. Great if there is no change but if there is a change and some kind of treatment is needed, 3 week delay won’t matter. The doctors all say go, they want to make sure we are doing all we can while we can. Works for me!

I have been so touched by comments left by all of you. I started this to release bottled up thoughts and it has expanded into so much more. And if anything I have shared has helped others in any way, wonderful. Writing and reading comments have filled me in ways I hadn’t expected.