David's 70th Birthday

I was thinking is it better to express my feelings after he is gone, or share them with my loving husband now. This led to my thoughts as shared below with my loving husband.

Happy 70^th birthday ode to David

Who will kill the cockroaches when you are gone?

My dad wrote a poem to Suzy, his mother’s dog and then his dog, after she was gone.

My mother asked me to read a poem when scattering her ashes after she was gone.

I want to tell you these things now, before you are gone.

You were not what I prayed for or dreamed up but you were the answer, better than anything I could have imagined.

We have traveled thousands of miles side by side exploring the country in various RVs. Adventures too numerous to begin to name. Volunteering, working and just exploring.

We have been to states and places that only existed on a map until they came alive when we crossed a new state line.

-Meetings and people and conferences and rallies, energy, excitement, sweet people and a few, not so sweet. If you hadn’t driven us, I would have missed it. You were the leader, I the follower.

Our vows in sickness and health came to pass. You have been visited by sicknesses, mild to critical. I wasn’t always the best nurse but you were always the best patient.

Are these the highlights of your life, speaking in front of 8,000 people in Atlanta, GA? Getting flagged down to turn off the propane before entering the tunnel under the Chesapeake Bay on the east, or barely able to pull off the road as the engine stops, feet before the Eisenhower Tunnel.

Maybe the annual meeting getting a cash bonus award for selling ads and collecting the most cash up front.

Or was it getting detained at the Canadian border for an incident over 40 years ago.

For me it was a young couple, sitting by the campfire at San Simeon State Beach drinking brandy to keep warm,  my hair stuffed into a beanie on my head, snot running down my nose (so you said). Later you told me that was when you knew you loved me. Our first camping trip in a tiny pup tent; the adventure was just only beginning.

My only prayer for you is to not suffer – at least not any more than you already have. You have brought joy and happiness to many; you’ve been an inspiration to many more. You, my warrior of hope, you have given me more than I can ever repay. I can’t even imagine what my life would have been like without you to influence, guide and share with me. I love you beyond anything words can describe. Even this is inadequate but I wanted to tell you and only to ask who will kill the cockroaches for me, when you are gone.

Results are in

The results are in! It’s a Christmas miracle, David is remaining very stable. His tumor has not grown since his last CT and has not spread. We will now do a scan every 2 or 3 months. The doctor’s main concern is if it were to spread. Per the doctor, David’s biology is on the good side. Today we heard for the first time, a possibility that it is benign; might be due to the experimental radiation. We are ending this year on a very up note. Thanks for all the prayers, they are working!

Waiting for Results

12/8/17: Watching the SoCal fires on tv and listening to the advice for preparedness, one of the items is keep your gas tank filled. That’s a good tip, and one of the first things I started doing when David started chemo. The danger of an infection and immediate need to get to ER, made that a now standard practice. Another preparedness tip that we started when David became diabetic, caution over his blood sugar going to low and his passing out, snack bars and a high sugar snack are always carried in a cooler permanently in the car.

And when we had dogs, always kept an extra leash in the car. There are a lot of small things we can do; you never know what events may transpire. My favorite preparedness tip, keep the motorhome lightly packed, tanks appropriately empty/full, and your earthquake vehicle is ready for escape!

Later this morning David will have his telephone consultation with his doctor on the results of his latest CT scan. So glad we were able to do by phone because the strong winds fueling the fires would have made out travel to San Diego a bit more difficult.

I have not posted anything in quite some time. We have been enjoying the chemo holiday. Taken advantage of how well David has felt and done some traveling and just enjoying not being tired down with labs and doctor appointments and not being overly concerned with who around us if feeling ill and concern over David picking up a bug with his immune system. At this point, I don’t know that his immune system is back to normal but it is not as fragile as during chemo.

Thanks again for reading, I am just distracting myself and keeping my mind occupied until the phone call! Have a great day!

Results from CT

Results from the CT: Stable. Hooray! Tumor has not spread and we’ve been granted another 2 months off, until the next CT scan. David is to call immediately if he experiences any pain before that. I declare that will not happen! But if it does and/or if more chemo is indicated after the next scan there is a trial adding a new drug, it’s in phase III and would be the perfect clinical trial. While that sounds good, I’m leaning towards, let’s not need it.

Some of you joined us at Purple Stride last Sunday. What an event. It was uplifting and emotional and even fun. We are already planning for next year. And we’ll be more aggressive in our fund raising so be warned! And again, thanks to all who contributed. Survival rate has gone up (it was about 6% and now is at 9% for 5 years). If you want to learn more, check out pancan.org.

The main thing I will be exploring is how to get my hair more purple. The spray on purple color and purple glitter did not show up unless the sun was shining on me! I know it was there as my hair was like a helmet with all the spray. Researching coloring my hair is much more enjoyable than researching pancreatic cancer, some days I can do it, others, not so much. Thanks for walking with me on this journey.

The Longest Week Oct 4th

The Longest Week: David got his CT on Monday but we won’t know results until next Monday or next Friday at the latest. We are anxious and hopeful as always. That darn waiting in the hallway!

We have made good use of the chemo holiday. It’s been a real joy and a holiday of a different sort. David still gets tired easier and will fall asleep in the middle of a discussion. I don’t mind that so much anymore but it still gives me a start and scary moment or two. His chemo brain (forgetfulness) is worse than ever. That gets so frustrating. I try to think of him as an Emu and just restate or re-explain or re-answer. I use the Emu analogy from the bird show at the Zoo’s Wild Animal Park (long ago). When the trainer brought out the emu they described his memory such that the emu made 3 new friends every day (He performed 3x a day). We both remember that so use that as our fun reference.

Sunday is the Purple Stride Walk, fundraiser for Pancreatic Cancer. David has a team, Fist Bumpers. We have turned it into a fun weekend event. We will take Mercy (our little motorhome) and stay at the Mission Bay RV Park. That way we won’t have to fight traffic or parking and can invite folks to hang out with us after. We will have some snacks and I have purple plates, purple cups, purple forks and a couple other purple items to maintain the theme. What the heck, along with some purple hairspray and suddenly what could be a very somber event, has been turned into fun and celebration!

Holiday - 2 1/2 months 9/13

Chemo holiday continues: this is just about 2 ½ months. I am amazed at how quickly I have forgotten the fear and the side effects of David’s cancer. He is thinking about participating in Purple Stride, it’s a fund raiser walk to increase the survival rate of pancreatic cancer by 2020. I was looking at the web site and reading. The first thing I noticed was Survivors did not have to pay an entrance fee. I was struck by the sudden realization that David could sign up for Survivor, which sounds so positive. I wondered what qualified and realized that it's been over a year and half since his diagnosis and since he is still alive – he must be a survivor!

The articles also reminded me about the pain David experienced (which brought about the diagnosis) and the side effects of the pain meds. Not to go into any of those details, it is really nice that he doesn’t have pain and he doesn’t need the meds.

Just the freedom to not have endless schedules of labs and doctor appointments is refreshing. We recently went to Yuma for just a few days to check out our place and see some of our year round Yuma friends. (You may have read on FB about being locked out the first night because we didn’t bring the house keys!) And now we are packing to take the train to Van Nuys for a long weekend for a conference. Upon our return we have a couple rallies we plan to attend, Borrego Springs for Borrego Days, something we have often gone too and then Las Vegas in early November. I trust we will be making these events. David’s next CT scan is Oct 2^nd which will be directing future plans. My mind is hearing “see you in another three months!”

Fun note that I forgot to mention about our Alaska cruise. I was on stage for one of the magic shows on the ship. It was early in the cruise, so later I was getting lots of comments from other passengers. Several said I did well and had some great facial expressions. Wish D had taken a video but I think he did get a couple shots. That was a fun bonus of the trip. Maybe I have a new career possibility – not.

Alaska Cruise

August 30, 2017: Cruising time is over, back to reality and news. Watching the damage from Harvey, so tragic. Not to make a comparison but it brings back memories of some of the storms we encountered in our RV. The one on the Outer Banks might have been the worst/scariest. The wind and rain and the water from the sound coming up to reach the sea and watching it rise up to picnic table height. During a lull in the rain and wind we moved to higher ground with the help of the park manager. We were able to be in shallower water following his flashlight about 10 at night. The next morning waking up and all the water had receded. It was like nothing had ever happened. How scary was it, well, we never went back to the Outer Banks.

Alaska: Beautiful of course. But after 13 days of no sun, we were quite delighted to dock in Victoria BC and have a sunny day. Weather aside, it is Alaska after all, we enjoyed our cruise. We had done this cruise previously and other cruises, this one was different. I think we both had in the back of our mind why we were taking this cruise now plus David not having full energy meant no XXXX tours off the boat. For me, it was also brought home that I am for sure not a full time RVer anymore. My usual response to the very common question, Where are you From, was always USA-at-Large. That answer opened up conversations on RVing and how do you get your mail. Not this time.

We had an interesting mix of dinner mates with the open seating option.  Some folks we wanted to sit with again and some we wanted to run the other way!

The first sea day we met with our cruise critic group. These are folks we got to know on the web site before the cruise. We’ve made some friends and gotten good tips on the web site for other cruises. There were about 60 folks who showed up. Mingled and spoke with most of them, the last couple we talked with was quite interesting. He was on a 24/7 hour infusion for his heart. We each complimented the other on living to the fullest, taking cruises, enjoying life as much as possible. Shared some experiences of medical difficulties and travel issues. Unfortunately we did not see them again which is unusual on a ship this size. I hope all is well with them and that we just missed crossing paths.

Our last breakfast a couple joined us at our table. Somehow the conversation came up that the wife had the Whipple surgery for her tumor in the pancreas. Then the conversation got quite animated with David and the wife sharing experiences. What a coincidence, small world, great to hear her story.

 There is a lot more I could share, maybe later. I’ll end on this note of our return to San Diego only to spend the next day at the doctors. David had swelling and redness of his ankles and shins so to be on the safe side went to doctor to check it out. His primary was unavailable, but on our way out of the doctors here came Dr Zhou, his primary. He recognized us immediately (even tho hadn’t seen him in over a year) and stopped to ask how David was doing. He thought David looked great. It was a brief but positive encounter. I loved this coincidence and felt buoyed up as we left the facility.

BTW, David does not have DVT and we can’t really interpret his other blood test results but we think they look ok! Until I next write, give somebody a hug or at least a smile. Enjoy today.

August 6 2017 MD visit

We’re back from MD! The return flight had a bit of excitement; fueling truck tapped/hit plane wing and we had to change planes, caused delay and frustration and interfered with my planned sleep to San Diego idea. It must have been quite a sight to see the plane load of us racing from gate C to gate A. I think some folks thought they would get on sooner and get a better seat. Arriving at Gate A, we got the announcement that it should actually be Gate B. All this rushing and walking got me totally awake. The good part was that they made us line up and board in the same order as originally. Since the plane was not full we got our same 3 seats for the two of us and had a bit more comfortable flight. Before I could even think about the letter of complaint to write, we got an email from Southwest with a $100 voucher each to compensate for our troubles. Great, I’m planning another trip!

The first agenda item back in MD was to take a tour of Chris’ work place and the museum nearby that has one of the planes Chris flew. It was really very interesting. Since there’s a lot of top secret stuff, I won’t say any more about it! (No, we didn't do any top secret things.)

One day we went to Solomon’s island and museum, another interesting museum that David and I checked out.  Later at the house I “shopped” in one of the closets and picked a Solomon Island sweatshirt from the many available. I was only going to borrow it but Missy generously insisted I take it with me when we left. Thank you.

Their townhouse is in a great location, boat races at the Warf which is steps away from their door.

We also drove one day to the southernmost tip of MD; I think it’s always fun to do things like that.

David had a couple incidents with his diabetes. I get scared and then mad. I want him to pay attention to what he is eating so he doesn’t go low in the middle of the night. But I also know how hard it is and with fried food and bar eateries only on a totally different schedule it’s nearly impossible. Diabetes can be cunning and baffling! We wonder too if the lack of chemo affects his insulin. Always something.

Glad the brothers got to celebrate Chris’ birthday together (along with others). A bonus was having nephew John drive down from PA with two of his sons, Jake and Jude who was celebrating 7 yrs old. And not to leave out Hayden and Bella (a couple of greats) who I really enjoyed getting to know better.

Travel with out the RV

July 20, 2017 time to travel! We are taking advantage of David’s 3 month chemo holiday and are going to do some traveling, none of it by RV. First we are flying back to Baltimore MD to visit David’s older brother, Chris, and wife, Missy. It’s also to celebrate Chris’ birthday. We are really looking forward to this, visiting and maybe seeing some DC sites. Let’s see how well we can pack, we are going to try for only one carry on each. Missy can we use the laundry?

After that we are going on the Alaska cruise that got canceled last year. It is really great and a miracle that we can even think about doing this. It’s on a different ship but still with Holland America and a few weeks later in the season. Maybe I can learn from the MD trip that I don’t need to pack so much and try to get away with light luggage. It’s the bulky sweaters and scarves that take up room. Now for David to decide if he wants to take his tuxedo, we enjoy the dressing up but fewer and fewer are doing that these days.

Stay tuned for more adventures – isn’t that more fun than doctor updates!

It's been one year.

July 8, 2017: First of all it is unbelievable that July 3^rd marked one year since David had been officially diagnosed with pancreatic cancer. That he has survived this long is a miracle, due I am sure to his good genes, good attitude and lots of prayers. His CT scan one year later shows no spread of the cancer, also a miracle. Tumor is still considered inoperable.

His oncologist has placed him on a “chemo holiday” because there is no biological evidence to show if more or no chemo would have an effect on the tumor. She wants him to have another CT scan in 2 or 3 months. David has had 11 sessions of chemo, that’s a lot and his body needs a rest. He is very bald and very fatigued these days (we don’t care about the baldness, after all he did shave his head but the no eyebrows and no eyelashes is a different look).

Monday we see his radiologist, one of the monthly follow-ups from his study treatment. He (radiation doc) also gets a copy of the CT, so we will see what he has to say. Actually last month he was in favor of a chemo holiday starting then and encouraged us to go on a cruise and enjoy ourselves.

So I think that is what we will do – go on a cruise. We are thinking at this time of year either Alaska or New England/Maritimes. Both we have done but it’s not the time for a Caribbean cruise! Anybody wants to come along or weigh in on the choices, give us a shout.

Refrigerator (RV) check light

June 25, 2017: Great time with our camping group at Sweetwater Summit County Campground last week. It was great to see and be seen by our camping friends. We have been members of this groups since 1998. There were a few issues: rig was overrun by ants; refrigerator stopped working; propane alarm kept going off but otherwise all was well! I was very proud of myself Wednesday night with the check light came on the refrigerator. This was immediately after David had left the campground for a bit. I remembered that it needed 12v for the circuit board even though we were plugged into 120v. So I checked the batteries and sure enough they needed a little water. I added the water and fridge began working again and the propane alarm did not go off that night. One of the guys checked the batteries after I added water and said they were working fine, charging etc.

Thursday night check light comes on again. Grrr. Turned it off and moved a couple “blue ice” next to the milk to make it through the night. And propane alarm went off later in the night. There are several theories, thoughts, ideas and wild guesses which I will not go into here. Bottom line, made an appointment to take coach into shop July 6 which is just before the all important oncology appointment July 7. At least this happened on the last day of camping.

David was still “recovering” from his chemo treatment the previous Thursday. He took a lot of naps and missed the morning walks. But he and I were glad to be an “RVer” again for a few days.

Saturday was our monthly breakfast with the camping chapter. Many of the same folks were there that we had just spent the week with. We sat next to a new couple. It was so fun to talk about beginning full timing, brought back a lot of memories and great to share some of the things we learned. It also reminded me of all the work and issues that had to be worked out, more than I want to even think about!

After the breakfast and naps at the house along with a few chores (for me) we took the rig down to Sea World to check out the new nighttime shows. They have a lot of new electric type shows. I love all the lights at night. It was also apparent to me that David does not have a high level of energy. We did a show, grabbed a bite to eat, then to the rig to rest. Went back to see night time features and after one show back to the rig to head home. I would have liked to done some more walking around and in the past we would have but David said his legs were feeling like rubber. No problem, with our passes we can go and see one show or one section at a time. That concludes a busy fun filled week.

June 15 - doctor, chemo, Sea World

June 15, 2017 Today is chemo; yesterday was visit with oncology doctor. Looks like another CT scan will be July 3^rd, hey, that’s exactly one year from David’s ER visit to confirm his pancreatic tumor diagnosis. Dr Liu says that David is an outlier because the average is 6-8 months life after diagnosis. He is doing well (all things considered); tolerating the chemo, etc. After the CT scan he will most likely have a chemo holiday. He’s had like 11 sessions which is quite a few treatments. I can tell he is not bouncing back like he had been. His fatigue is much more but his appetite seems to be good.

There is a slight chance of surgery but not only do I (with my medical background!) think that is not much of possibility. I don’t know how much I’d be for it. It is a very invasive surgery and lengthy recovery – for younger folks, let alone a diabetic, almost 70 year old.

All in all still very good report. We are keeping as active as possible and enjoying all the little things in life. In fact, we will probably take a cruise if/when David has his chemo holiday. We would wait a few weeks after his last chemo so his immune system can build back up. Next week we will be at Sweetwater Summit camping with our Escapees RV local chapter, Shanty Shakers. It’s good reconnecting with that group. Sadly, Kay Peterson passed away, her and her late husband, Joe, founded the Escapees RV Club. That club had a big influence on us and our full time lifestyle. We were privileged to have known both Kay and Joe and family. I don’t have the words to do them or the club justice, check them out sometime.

After chemo, we went down to Sea World for late lunch; early dinner and to do a little walking.

Ok, don’t forget to hug the ones you’re with and do something you’ve always dreamed of.

Desert Nights

6-11-17 Desert Nights: now this is what the desert is all about. Sitting out on the patio, it’s quiet and cool. We are reading after dinner. After awhile, we look up and see that night has come and the starts are out. It’s beautiful. Ok maybe there aren’t a lot of nights like this but I sure enjoy them when we have them.

It was a nice finish to a nice day. We went out to lunch and later friends stopped by for a short visit on their way back to Gilbert AZ from San Diego. He visits us in both places and this trip he had his wife and two kids with him. I don’t know who enjoyed showing off our tiny motorhome more, him or us. I thought they would be interested in seeing the park model (tiny house) but he first went to the motorhome. It really is a well laid out rig and its always fun to show it off. And in this day and age of no discipline I thought his daughter and son were well behaved, polite, and talked along with us.

Short visits are good for David. He enjoys seeing people but tires more and more quickly so he had a nap before dinner. And I had to fix dinner. Which if you know me is a bit of an issue but I managed. No, I will not tell you what was on the menu.

Returning to San Diego for next chemotherapy. Only a couple more and then another CT scan which may give us a new direction – maybe . We are grateful that according to the last scan, David is stable. I guess that means the cancer has not spread and we take that as good news.

June 6 2017 - Happy Birthday Dad

Today would have been my dad’s 92^rd birthday. He never got to hear any of our travel stories but I know he was watching us. He did not travel like we did. My dad was up at dawn and drove until dusk, not like us. We lived by the 10-2 rule. “Out” by 10; “in” by 2. Basically you left your campground by 10 a.m. and checked into the next one by 2 p.m. That way you missed any morning work traffic and got a site early enough to enjoy the place and before they filled up. It was just a general rule giving us time to be relaxed and actually see some of the country. Ahh, the good ole days, I sure enjoyed them but don’t miss them. 47 states and maybe a couple hundred thousand miles; which includes Alaska and Hawaii even tho no motorhome was involved.

All that travel, all those places and here we are in Yuma! I can’t believe how much we are enjoying it here. This has turned out to be such a great escape. When we are here, we feel like we are on vacation and have gotten away. Since we arrive a day or two after David’s chemo treatment, the first couple days are lost on him. He has pain and discomfort.  That may not be an adequate description but he is so good about not complaining, I’ll leave it at that!

There are a few folks who are here year-round. They always welcome us back. The park has an exercise room that I use, a bit, a pool which David isn’t to use and a lending library. The library has supplied us with movies and puzzles. My mother loved puzzles and I seem to be hooked too.

Cheap movies at the local theater with some very comfortable seats and lots of restaurants and shopping because we are still putting our own touch on our place here. David is good for only one activity until he needs to rest. Then I just go to my puzzle or book. It’s all good.

If you are out this way, stop by and say hello!

Two docs Two opinions...

May 17, 2017: visit with oncologist. Well this was quite a different story from yesterday. One thing that was quite interesting was viewing the CT scan and have the pictures explained to us. We both now have a clear picture of how the mass is around that important artery which makes it inoperable. However, Dr Liu, oncologist still feels there might be a chance. It was also interesting to see all the various organs and how the pancreas is “hidden” or whatever by all the other organs.

Regarding the possible chemo holiday (see May 16) – NO. And it is not negotiable per Dr Liu. She does not want to risk the cancer growing, especially after all the work, chemo and radiation to get us to this point. Makes sense. So now plan is another CT in another couple months, chemo until then. But rather than think about 2 months, think of it as only 4 more chemo and 1 is tomorrow, so almost done! How’s that for a positive spin?

Meanwhile we have an appointment to take Mercy the motorhome into the shop. The mobile guy was unable to fix it. We can use it without propane but if it gets hot, we’d want the a/c and without propane, no a/c. With electricity hook up we’d have a/c but I was thinking about taking it over to Yuma for a few days get away.

May 16, 2017: radiologist visit at UCSD. He felt it was too soon after radiation to see effect on the CT. Gosh, why did we (oncology requested) get the CT done too soon. Dr Murphy says at this point he would consider David stable. Suggests it might be time for a Chemo Holiday. He also talked some about surgery. It really doesn’t sound like it would be a possibility. Surgery is not a piece of cake; even the 35 year old is having a struggle recovering so consider David is almost twice that. We ended the visit by David saying maybe we can go on a cruise after all. Dr Murphy said GO on the cruise, don’t just talk about it.

May 12 2017 No News

The journey continues, I haven’t posted anything in a while because it seemed there was no news and little activity, so what to write about. Well, there is still no news but there will be soon. David had another CT scan, this is the first one after radiation and of course we really wonder what it will show. Wouldn’t it be great if they said, hey, we don’t see anything! That probably won’t happen but fun to think about. It’s all this waiting that is testing our strength. Next oncology appointment is Wednesday, May 17^th. I am not sure how much she can tell us, as any surgery would really be determined by the surgeon. My understanding is he will automatically get the CT scan for him to also review. But as to how smooth that flows, I am not sure and will follow up if needed but right now, trusting the system.

David also has a follow up appointment with the doctor at UCSD. That is next Tuesday. At least it is at 1:30 p.m. so we can manage the traffic. We get to park over by the small building, so that too will be quite easy and uncomplicated to do (vs. finding a spot in the parking garage and then inputting a code for “paying” for the spot).

At last we got to join our Escapee Shanty Shaker chapter for a rally. It was great seeing everyone after such a long absence on our part. It had also been a long time since we had stayed in our Rv. We did not have a lot of our usual stuff in the RV and when we discovered a propane leak which meant we had to shut off the propane leaving us with no hot water we were not happy campers. I don’t mind using the camp ground showers (these were very nice) but I have shower shoes, bags and soap that weren’t with me. I managed but missed having “things”. Cooking was not an issue as the casino had a very nice café that we visited on several occasions. It was fun going to eat with our group and reconnecting.

We have a mobile RV repair scheduled to come out to the house. Hopefully he can replace the LP regulator and see why the electric side of the water heater is not working. RVs and boats always need something repaired! I am doing my bit to help the small family business. Houses need continual care too; the hallway bathroom toilet seat bolts were lying on the floor when we returned. Looks like they had just broken off. Got a new toilet seat and I put in the new screws and seat. Repairs everywhere.

April and some good news

April 19 2017: Have enjoyed time off from Chemo, David has called it his chemo vacation and in a way, that’s what’s it been. His last chemo was February 23^rd and now his next chemo will be April 20^th. Wow, that’s almost two months. But don’t forget that 5 days (March 23, 24, 27 -29) of high intense radiation fell in the middle of that “vacation”. Except for traffic and scheduling, radiation was almost a piece of cake. Recently David has begun to feel a bit of fatigue. We have also noticed that David’s hair and eyebrows are growing back in a nice brown color. No more of the fine white fuzz. Not sure if hair will again vanish with chemo starts up. But that is not a concern just interesting phenomena.

The good news: Dr Liu is very happy with David’s progress. She did share that it makes her happy to see patients with such good progress. I can’t imagine how she handles patients and their illnesses. Glad David can make her day! She is confident that he will be a candidate for surgery. His next CT scan, with the big reveal, will be sooner than we had expected. David’s blood test showed many numbers are normal or in a good range, his kidneys are fluctuating a bit but still ok and he has developed clots in one arm vein from one of the harsh chemos. Forgotten the tech name and I may or may not look it up.

Feelings, thoughts, emotions, are all over the place. David is feeling the best he has in a long time. We made the most of it, doing small chores and fun things. We will continue to do all we can, including another trip in the RV over to Yuma. We are then going to rent a car as we are thinking of buying a new SUV. And I guess all of this has worn me down, as I am now shorter than I was. A check at the doctor, revealed me shorter and rounder than I like! Humph…  

End of March ramblings

March 31, 2017: Where has March gone? We are going over to Yuma to the park model for a few days. We sure appreciate having that get away. This will be the first time we will have to think about what we are leaving there to spend the summer in 100 degree plus temps. We plan to take a couple odd trips over for short periods but in the meantime, what can we leave there that will be able to stand the heat. We will leave the a/c on, set at 90 or 95 degrees and haven’t decided if we should again leave trash cans of water to offset the dry heat. Oh, the quality of our problems today.

BTW, David (me too) likes have this couple of weeks off with NO doctor visits or treatments. Still having issues with low blood sugar that we can’t figure out. The other night it was bad enough that I actually got dressed because I wasn’t sure if I’d be calling 911 or driving him to ER. I was wearing a cute area 51 night shirt but thought I’d feel more efficient in day wear clothes!

March 29, 2017: Today should be a happy day in that it is the last radiation treatment. We got there early and waited and waited. As suggested, at 20 minutes past appointed time, David went to the check in counter. Oh, she says you are next but you were supposed to be here at 9:15! Nobody told us, we had a print out with 9:45. A tech came out to talk to us. She relayed that appointment got changed about 30 or 40 minutes before David’s’ appointment yesterday, Tuesday so they were to give him the new schedule. Well, no one gave him a new schedule or said a word. I said you really need to call, paper hand out or not. I understand it throws them off too. As it was David didn’t get in until 10:35 and 11:15 we were out. A good hour after we should have been out. It really threw us off, I feel very bad for those who have to do weeks of radiation. David got 2 time changes in just 5 days; I would not have managed at all if we had been doing this for weeks. Grateful it was only 5 days and now that particular adventure is a wrap!

Now we have a few days of no appointments! Hip Hip Hooray

March 23 First Radiation Treatment

Today started off very early. I was not sleeping very well (no I was NOT anxious about today) so got up and started a pot of coffee. At 6am I brought David a cup of coffee and we both began to get ready for our trip to La Jolla. I’ve already forgotten what time we actually left. We got there and surprise the check in was open. They gave us our parking pass but would not check us in until we committed to staying in the small crowded waiting room. We went over to Thornton to have breakfast. It was a little tricky to figure out the proper order to get breakfast items; we’ll do better next time. We had breakfast, got coffees, sat and read a bit and about 8:30 went back to Moore’s Cancer Center and officially checked in.

We knew we were in for a wait so did some reading and web surfing. There was also a three-some waiting. They were there before us and after us so they much have done the same arriver early to beat the traffic. David’s appointment had been changed from 10 to 9:30. As it was approaching 10, I went to the front desk to verify schedule. As I was at the desk, Carmen, Social Worker, came in and was talking to David. I told the front desk, oh, I see someone is talking to my husband now, she informed me, no, no one was available but she would follow up. Well okay but… Since I saw Carmen there with David, I walked over to hear what was being said. Sorry for the delay. Well crumb, we could have left the house at 9 and gotten there just fine. At 10, the original appointment, David was called in.

I made myself comfortable and read and listened to others around me. Someone else had been rescheduled, came in earlier and was now waiting. Well, at least it wasn’t just us. After about 40 minutes, Carmen came out and told me David had done fine and was dressing and would be out soon. I thought it was nice she spent a couple minutes talking to me. The only issue I had was that I was just about to finish my book and I hate getting interrupted so close to the end! LOL

David felt fine. We were both tired. David told me all about his new adventure while we drove down to Sea World. Yes, I know, Sea World again! We have an annual dining pass so we popped in to do some walking and have a healthy wrap sandwich. We then rode the sky baskets since there was no crowd. David says he wants to ride the Manta rollercoaster but I don’t think so.

We got back to the house about 2 and both immediately took a nap! Tomorrow’s appointment is at 10 a.m. so we will leave the house about 9, no early morning beat the traffic needed.

March 20 Yuma and appt conflict notes

This is getting real old real fast. Last night David’s blood sugar went low, again. This is now 3 or 4 times in about the last week. We are trying to figure it out, have a couple ideas and we will redouble our efforts. My concern is if it happens too often, your body stops sending some of the signals and then will David wake up and know to take care of the low blood sugar.

What a fun few days we have had. We are getting more and more comfortable in our park model (tiny home) in Yuma and getting to know more folks. We attended a happy hour with a couple two doors down. Met some new people, one who is there most of the year and keeper of the keys for many who are gone for the summer. He is the one who can check on your house. Glad we got to meet him so now that is another small issue that can be checked off the list. I can’t imagine what we would need him to check but as life is full of surprises, good to have him for a back up. Our neighbor right across the street has been really good about helping us, already has a key and turned our a/c on once before we got over.

Confusion.  David got a reminder call for his chemo appointment Thursday. What? He is having his first radiation Thursday and we recall that there was to be no chemo treatments about 7 days before and after radiation. Called UCSD and called Kaiser Oncology. Everyone saying yes, you have appointment. That wasn’t the question. Later David checked on line his upcoming appointments for Kaiser and the correction had been made. No chemo for Thursday and a bonus, no oncology appointment for Wednesday. And the next chemo April 26. It’s like getting a pass to go play! Lesson is be sure to read information given (we reviewed the radiation handbook we had been given to verify the days off) and be your own advocate.  Double check and verify. Glad we did.

march 13 2017 Constant vigilance required.

Constant vigilance required: The other day we spent a pleasurable afternoon wandering around Sea World and catching one of the magic acts brought in for March. This included having a meal there which was balanced out by the extra walking we were doing – that’s how we justify having the red velvet cake desert. On the way home, we stopped to visit David’s dad at Frederica Manor. We ended up staying to join him and Jeanne for dinner there. We all enjoyed a good chat with some real belly laughs (always good medicine).  Later that evening, David was not feeling well at all. He was tired so we retired early. Before going to sleep, David again complains of feeling “off” and in a bit of pain but not like before. Thank goodness he then thought to check his blood sugar (Type II Diabetic). His blood sugar was 69 (this is too low). We did the necessary “get a snack with sugar for quick fix and protein to last through the night”. As we are waiting the 15 before rechecking blood sugar we reviewed the day and the carbs consumed to figure out what went wrong.

A lot went wrong. Lunch and dinner were both short on appropriate carb intake. We did have extra exercise which lowers blood sugar and some short, fast acting carbs without the usual bedtime snack to carry through the night. And he had intentionally skipped a pain pill. We just weren’t really paying attention. Looking back we both see what we could have done differently – actually not differently but routinely! It really is about constantly being aware and vigilant; boring, tedious, not fun but necessary.

Moral of the story: if you are young and/or in good health – ENJOY, please appreciate what you have, don’t take it for granted. And if you are older and not in the best of health – ENJOY that too

March 8 2017 SBRT mapping

Today we are mentally preparing for tomorrow. That is the day for mapping, the process of planning radiation treatment for David’s tumor. It will be a couple hours and then another 7 -10 days for the plan to be fully developed. Obviously much planning for a precise project. Today started with concern of when to leave the house to allow for traffic which led to what time is the appointment. Here’s a tip, don’t put your appointment on your google calendar when you are in AZ because when you are in San Diego the mountain time will be different. I thought I came to the rescue because I had used pencil and a paper calendar to write down the time, however, David still felt the need to call and verify. That is fine, better to be safe than sorry. That call informed us it would be another contrast scan which I think meant special instructions for medications. So now I will look at previous paperwork to verify what that might be. And here I thought retirement meant I would have lots of spare time on my hands. Ha. Has anybody found that to be true?

Now in the morning I will look at google maps for time and direction to UCSD La Jolla. Nothing like our days of full time rving, one large atlas supplemented with individual state maps that we picked up at the state visitor information center when we entered a new state. The visitor centers were a wealth of information from things to do and see, places to stay and eat and often a dump and fill station along with a long pull through where we could rest and eat. And even some where we spent the night while traveling from point to point. Our favorite rest areas were in Kansas. They actually had separate loops away from the main parking where you could park for the night with picnic and BBQ provided.

Back to the map issue. We had a small crate that held various maps and campground books. I often joked that I did not see much of the country because I was busy looking at maps and books. It was a real thrill when I got Streets and Trips mapping program on my computer. I could input our destination and stops along the way. It really was an improvement over paper maps. I still use it on a rare occasion but to tell you how useful it is – it’s no longer available! Gone to real time maps on smart phones.

March 3 2017

Today David is getting the gold fiducials implanted in his tumor. These will be used for precise targeting of high radiation doses. Since this is being done in San Diego we had to once again leave our Yuma retreat. We got up early hoping to beat the winds that were forecast. I always think leaving extra early before anyone else is up and the park is quiet means we are heading off for an adventure. It adds an extra element and reminds me of fun trips. I transferred our coffee into the travel pot and premeasured cereal that we would eat at the rest stop. Back in the days of the big diesel pusher I was able to do all sorts of things while David would be driving us down the road. I could put the coffee pot in the sink, for stability, and make a pot of coffee using the solar panel electricity. There was room up front to put the travel pot and I could pour us cups without having to leave my seat. And even though I am not the one who does most of the cooking, on travel days, I was up out of my seat, in the kitchen, putting together lunches and snacks. Probably not supposed to do all that moving around while the vehicle was moving but I loved being able to do that. I still can it just isn’t as roomy in little Mercy.

Yesterday turned out to be a very full day. Not only did we return from Yuma, unpack Mercy; meet with our contractor; go to Sea World for lunch and exercise and a nap; but also managed to get caught in traffic and took way too long to get back to the house which put a damper on the Sea World trip but that certainly distracted us from thinking about today’s procedure.

The plan is to go back to Yuma for a couple weeks after the mapping appointment and before the radiation begins. That should give us a chance to say goodbye until next season to our new friends in the park and Close up the park model for the summer. Although we think we may run over now and again even during some of the warmer times because the park is sort of fun when it is almost a ghost town with only a few year round residents. And if we time in right there are a lot of end-of- season sales.

February 26 2017

David is very fatigued today. I think after 7 months and 18 separate chemo treatments it has caught up with him a bit. The time off while he gets the SBRT procedure will be a good break, give his body a chance to regroup. Maybe he will feel up to getting back to cooking us meals, my repertoire is pretty limited.

In the meantime if you want to explore some of the information available UCSD Moores Cancer Center has a great website. In addition to the radiation class we took they offer a lot of classes for patients and families. I want to take the nutrition seminar and yoga but hesitate with the drive and traffic.

Back in March 2016 we purchased a park model in Yuma AZ. Think of it as a tiny house within an RV park community. We looked forward to spending winters there and putting our mark on the generic tiny house. It would be close enough to San Diego that we could run over and visit David’s 95 year old dad. However, instead it has turned into a mini retreat between oncology and chemotherapy visits.  Many of the folks on our street are from South Dakota. One gal is quite the baker and is always bring over cookies or pieces of cake.

Slowly we are outfitting it; pretty much have all the basics we need. I brought over several pictures, some to hang and some to place in our glass cabinet. Pictures include at least one of every camping unit we have had. Best picture is one of each of us when we first met, each with long flowing hair! I need to figure out how to post pictures.

February 22 2017

Busy day, Lab draws first thing in the morning; appointment with Dr Liu, oncologist,; radiation class at UCSD La Jolla; after a miscommunication about where to eat dinner; fight traffic to get home.

At the oncology appointment we get good news about the tumor shrinking, even some of the soft tissue has loosened around the main blood vessel, but some still there. Also says down the line, surgery may be possible. This is followed by disappointing news, chemo will continue, only the chemo for March 9^th is canceled.

We have lunch at Outback. David has steak because he is anemic (really). I have coconut shrimp; this was always a favorite dish of both our moms.

UCSD: interesting parking with lights on stalls to tell you which are available and using the meter to get our free parking ticket. The class was beyond informative. We even got a personalized slide show afterwards for David’s SBRT. The technology is incredible. I’m glad we went. I think it is so important to take advantage of all the services offered. David is going to take Carmen, social worker, up on providing a guided meditation with his selection on music for his mapping and treatment. The mapping will take some time on March 9^th so I will explore the meditation room and the bamboo garden.

Off to Yuma for a few days of RnR before this new adventure begins!

February 6 2017

Monday consultation at ucsd La Jolla. Met with resident and then dr jim murphy. Liked both of them and the nurses. D’s blood pressure was a little high. A lot of information. The young guy laid most of the ground work. Radiation could be 5x a week for 5 weeks, that’s 25 trips to La Jolla for about 20 minutes and meet the doctor on Mondays. The other choice is 5x, period, for about an hour. This is real time radiation. Gold markers are placed in the pancreas, using the same method as when they did the biopsy, by Kaiser. Your pancreas moves as you breathe; markers will track and therefore send radiation to smaller area, more precise. This has more risks, a couple which could cause a need for surgery to repair but it is only 5%. Radiation will not prolong life but chemo cannot go on forever. And while David is tolerating it well and it is working (tumor has shrunk) the tumor will eventually change? And chemo will stop working. At 7 sessions this is already a long time of chemo. Radiation is a onetime deal. The plan is radiation will stop the growth and maybe kill the tumor. It is possible to go back to chemo is necessary.

Some of this information may be in the material we were given. At this point we were both a little overwhelmed and I was torn with doing anything. The doctor then came in. He listened very well to David. We asked a couple questions, He said that’s a very good question each time! It all seemed to fall into place and we both wanted to go with the short term radiation. What will take longest is getting appointment with Kaiser to get the gold markers implanted/appointment. Doc said there are 3 “types” of tumor, operable, maybe, no, David’s’ is the latter category. Some people choose radiation over surgery. It is not an easy surgery.

We liked that the young guy said yes, we should have delayed our appointment until today to go and do last weekend's events like we did. Enjoy life - daily.

David is 28 in a study of 30. He will get surveys on quality of life periodically. He already filled out the first one. They have determined 45 gray is the amount of radiation to use. It is not so much at the study stage by now, phase one. They will follow up for 2 to 3 years that was the best thing we heard!

January 24 2017

Update on David based on today’s oncology visit from what I heard. (Because it isn’t always what David heard or what was said) Tumor has shrunk a bit but surgery is not an option. Consultation for radiation is being set up which would include chemo. Not sure if this is an option, need the consult first. Meanwhile, chemo will continue, every other Thursday. That was almost an issue as scheduling hadn’t gotten the message it was not to be weekly. Have to be your own advocate. But it’s all good; David feels pretty good and is getting a snowy white head of fuzzy hair. He looks so cute!

december 28 2016

Oncology visit today after labs. Dr Lui is excited to see us (David). She bubbles as she tells us that David has gone farther in chemo than most patients, he has completed almost 6 series; without any ER visits or reducing chemo, etc. He is to have a CT in 4 weeks. She almost started to project optimism but stopped herself and said let’s see what the CT says. CT outweighs the 119 blood test. Dr also said David doesn’t look as if he belongs here. BTW his weight is back to what it used to be (161 lbs) There is a new protocol/treatment that was just approved (was not available when all this started with D. However, it causes diarrhea, enough so that some have been hospitalized for dehydration. Only if the tumor has grown significantly or starts to declare itself will D go to that treatment. Pancreatic is very resistant to treatments. He is doing way better than she would ever have expected.  She will be gone to celebrate Chinese New Years with her parents so we will see another oncologist doctor, she is leaving him detailed instructions on what she wants done based on the CT results. We will need to schedule the oncologist visit once the CT is scheduled. Radiology should call in a couple days for that.

november 20 2016 - I'm 65!

11/20/2016 My 65th birthday!

Nice folks over at Cactus Gardens (our park model home in Yuma), neighbors across the street have invited us to join their table for thanksgiving. Jo even bought rolls for us to bring.

Jo brought over 4 pieces of birthday cake for us (while Barb and Bill were here). Always thinking of us.

Evelyn K19 stopped by to welcome us back and offer her car for our use if we don’t want to take out the motorhome. I think she is aunt to Donna the smoker, one door over. We don’t see a car parked in Evelyn’s space, maybe she and Donna share a car and I think I want to take her up on her offer.

September 20, 2016

I have spent all day at the dentist, then came home and took a nap. Actually I already had a crown but it broke awhile back. You may recall that’s why I went to this new dentist. Anyway today was, well, something else. Went for a cleaning today and she found all kinds of things. Are they true and necessary? I don’t know. Said I need a deep cleaning, after she measured all my pockets. Some were ok but several were 4, with a couple 5 and a 6. 3 is the highest number you want. And she wants to put a bridge in that space I have. I did agree with her explanation which if you care I will tell you but not type all. I suddenly felt overwhelmed and you’ll like this part, I started to cry! I couldn’t believe me. So I told a short about husband. She said lets just do one thing at a time. Blah blah blah

Because the guy who does root canals was in today and he could do mine, I said ok. I came home, told D had a tiny bite to eat and D drove me back. She removed my broken crown which was a job and fitted my temp. During some of the waiting she asked me some about D and talked to me some more. I was back to my “usual” self. Then she sent me over to the root canal guy. That part was almost better than the removal. But all this open mouth and a couple pinches on my lips and root canal I am rather uncomfortable. I go back Oct 25^th for the deep cleaning. I could have gone sooner but if we go to Yuma and this way I’ll be all “healed” from root and crown. (perm crown Oct 7^th)

I think I might be more stressed than I realize. I need to go back to asking for people to do things. I have set up Molly Maids for alternative Fridays of cleaning; and playing phone tag with a designer for kitchen. 

2017

I started this blog several years ago and then forgot about it. I will try to add some updates and perhaps keep it current for a little while.
First of all, Vanny (our 2012 Leisure Travel Van, we now call Merci - because she is on a Mercedes chassis. Current mileage is almost 50,000 so we have done some traveling.
2014 we went from CA to Alabama and up to Winkler Manitoba Canada for some Merci upgrades.
2015 we spent the summer in Bend OR where we leased a lot and enjoyed it so much we leased the same lot for 2016. However, we were only able to spend the month of June there as David's ongoing pain (since January 2016) was finally diagnosed as a tumor on his pancreas. We returned to San Diego for further medical diagnosis and treatment.
I'll recap some of the events in another blog.