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.