D.C. Capitol Hill

Taking our message to congress on the hill. This does work. The house voted to give cancer of the pancreas its own line item in the budget. This is a big win, something we've been asking for, now to get the Senate to pass this too. We also continue to ask for more money. Included in our training and packet of information leave behind is a great chart that shows budget increases directly related to the increased survival rate. More information can be found on the pan can web site.
This whole advocacy day is coordinated by soapbox. The schedules and the technology to stay in touch is amazing. The “ cheerleader” guy who gets us fired up; I could so see David in this role.
David had prearranged with Ted Cruz office to have a wheelchair waiting for him. This was a great idea. There is a lot of walking, much of it retracing steps! Difficult to find your way around, even when asking. Going outside for the photo and to get to the other side, pushing up hill and down was a challenge. Others offered to help and I accepted. Hot, sweaty, muscles aching – oh, capitol hill, hill being the key word I didn't pay enough attention too.
I have a new respect for wheelchairs after wheeling down a long hall way only to discover the way out is an escalator. Similar situation happened more than once. The place is a real maze.
It's really an educational, informative event along with the location. Wish we'd had more time and energy to explore more. We were able to take the downtown trolley tour. This gave us a good overview. Lack of time and energy meant we only got off a couple of times, Arlington cemetery for a tram tour and Lincoln memorial (many years ago I walked up the stairs, not this year); Korea and Vietnam memorials. Bean burger for M and hot dog for D. We did not eat healthy on this trip but I was glad for all D ate. On a healthy note, I walked over 10,000 steps hill day and half of that was also pushing the chair!
There is a lot more to share, some great memories. PAN Can’a tag line this year was moments matter. We made a lot of moments that matter and to remember this trip. Perhaps I'll write more later. Right now it's chemo time. Until next time, enjoy the moment.

Travel to D.C.

My aunt Virginia would be appalled if she could see the airline attendants today. She had to watch her weight, hair and make up and had to stay single. We just had a very portly gent on one flight. I could see him from my seat as he sat in his jump seat. His shirt buttons were about to burst and his shirt was more untucked than tucked. And interesting note, all men no women strews on this flight.
Remind me not to take another red eye flight. I'm too old for trying to adjust to these hours. And I can't sleep sitting up, well, not real good. Thank goodness for the first class seats, incredible difference in comfort. Not to mention, warm mixed nuts served with your drink, followed with a warm cookie. David slept through all the snacks.
Finally we arrive in dc. We get checked in, very nice that we get our room before 9 a.m. we look around, unpack, not, and immediately fall asleep. We awake and head to breakfast. The buffet is $28 and no way is David going to eat that much food. So we order off the menu. It's taking a very long time, table next to us, came after us and got served. Our waitress comes over to apologize, something happened to our order. She offers us to get a little bit from the buffet, our orders will be out soon. We split a banana and bagel. Our meals come, they are very good. The manager then comes over and says don't worry your meals are taken care of. Nice start to a busy couple of days.
We did a short bit of exploring and back to the room for more napping before checking into the conference. There are about 650 folks registered, just over 100 are survivors. We've already seen a couple folks we remember from last year. And we welcomed a couple who are new, just like we were welcomed last year. It's all overwhelming and emotional. Monday will be packed with training, meeting our state teams and getting our schedules for capitol hill Tuesday.

Next blog for that day!

Temperatures Rose !

Temperatures Rose!

Yep, another trip to the ER, however, David was not admitted to the hospital and was released a little after 11pm. I was debating about joining some friends for dinner; David was feeling a little off so we did the usual, now normal to us, temperature check. It was high but not too high, 99.8. I decided not to leave and waited an hour and checked temp again. Oh, oh, 101.5. Time to grab “to-go” items, tablets, phones, charger, medicine list, Kaiser card and the new port card. Sweater and snacks.

We did not get checked in quite as fast as I expected because of David being on active chemo. And they took blood from each arm, the tubes for cultures had to be a separate draw for some reason. But once in the ER curtain room that nurse did use the port for the iv fluids and later another blood draw. We learned from her that all nurses are trained in accessing ports, but many don’t like to and won’t. She said David’s, because he is so thin, is obvious. Ports can be difficult to “find” with adipose (that’s a nice way to say – fat) and can even turn.

ER’s can be interesting. While out in the waiting room, security got called on a guy who was not checked in but in the waiting room. He was a bit loud, talking to himself. Not sure what happened but he did finally go over to the check in area. One gal came in who was claiming she couldn’t breathe, well, she was sobbing and you can’t cry if you can breathe; I got a kick out of the good looking male nurse who said to me, she’s breathing fine. Maybe I just enjoyed talking to the nurse!

Blood work showed most functions fine, anemic (nothing new here) and high lactic which had to come down before he was released. The lactic acid indicates something is going on but about 50% of the time with chemo patients, they don’t know the reason.

After two bags of saline; sandwich & apple sauce; pain meds another blood test which showed lactic acid lower but still slightly high; the doctor said if we felt comfortable, we could leave. David was feeling ok by this time and off we went. Just another day and another adventure.

David’s WBC was good which means we don’t have to be paranoid about germs but remain cautious. Who am I kidding – I’ll be paranoid. DC trip is still on the agenda.

Temperatures rising...

Temperatures rising

I’ll bet most of you reading that would think about summer and the heat but if you or a loved one is on chemotherapy, It’s all about body temps. I never thought I’d want to own more than one thermometer; one would always be handy and one near each bed! 

This came to mind because of an overheard conversation in the chemo suite and a friend posting on Caring Bridge. Who knew that I would one day have memorized the danger ranges? And low and behold, this has taken on the familiarity of what to do. The other night at 2 a.m. David was running a fever. It was 99.7, no cause yet for alarm but I started loading up the car. Now in all fairness, we were planning to return to San Diego and many items were ready to go, just not in the car yet. Here’s where air temp comes in, it’d been 112 so I’d put off loading the car and 2 a.m. was really a good time to get the stuff out of the air-conditioned house and into the car. So I loaded and then it’d been about an hour so checked David’s temp and it had begun to go down. Alright, this calls for me going back to bed and falling asleep. I guess I slept pretty good, David said I was snoring but that can’t be right.

Next day I drove us straight to El Cajon, no pit stop even. I think I wanted to get here and take a nap. That same afternoon we had to go to the hospital for David’s blood draw in prep for chemo the next day. Having the port makes it easier but it does mean we have to go to the hospital and it takes a little more prep time than a needle stick but boy does it save on veins and pain.

In the chemo suite the next day we were next to, must have been a new guy. He had one arm that was giving him a lot of pain and some swelling related to treatment. He also had been running a fever so the nurse was going over the critical temps. I was surprised that he didn’t seem to be aware of the possible ER urgency (temp of 101). That has been reinforced for us several times and as you know, we’ve had to act on it. On our way out, David commented on his port and the guy said it had been mentioned to him. David said, go for it.

The things that have become my focal points, oh my, have they have changed. What color nail polish to apply is no longer high on the conscious level!

David had a few days of feeling pretty good and eating more than usual and even going for a few walks. Of course, it’s back to sleeping a lot and eating a little. The usual chemo cycle. Another experience that quickly becomes the norm, the days after chemo I get distraught and feel a little down and then a few days before next chemo, David pops back and my world is bright and shiny. That’s a little simplified and dramatic. But hey, it’s my blog.

Trip to Washington DC National Pancreatic Cancer Advocacy day is coming. Why Advocacy Matters:

The federal government is the largest source of research funding for pancreatic cancer research, accounting for approximately 80 percent. We need more research in the field to develop better treatment options and improve patient outcomes.

Each year, your members of Congress determine how much funding will be allocated to cancer research. Meeting your elected officials and their staff in-person is the most impactful way to ensure Congress prioritizes funding lifesaving research for a disease with no early detection or effective treatment options.

Advocacy Day is the opportunity for you to bring your story to Washington, D.C., to raise awareness about pancreatic cancer, to speak on behalf of those who could not, and to provide hope for those fighting the disease.

 We fly out June 22. I’m looking forward to it and David is especially (thanks again to all who help support this). I’m a little apprehensive but am prepared and willing to take on any unexpected bumps along the way. Update will follow upon our return.

Catch up - several items

May 29 was the appointment after the latest CT scan. The doctor also updated us and intereupted some of the results of his molecular profiling done through PanCAN. Nothing seemed really conclusive and the bottom line is that David will stay on his current treatment. (chemo every other week, with the same two medications) We felt confident in what the doctor had to say and are comfortable with the decisions. No clear benefit to make changes at this time. Another CT down the line; things may or may not change.

Dr Z is basically looking at 3 aspects, how David feels, blood tests, CT. David is feeling pretty good (chemo effects aside), the labs are good, CT – mixed. The pancreas mass looks larger and the masses in the liver look possibly larger. But it’s difficult to say.

Now for more fun things. The trip to Reno went mostly without a hitch. It was ok flying out of Yuma but we won’t plan to do that again. The weather in Reno was cold and windy but since we stayed in the middle of 3 casinos all linked together by a “midway”, we didn’t go outside and still had plenty of space to walk, shop, eat and gamble. David went through his $5 quite quickly!

Washington DC here we come! I hope I can pack as lightly as I did for Reno, I’m proud of the limited luggage we took. I’ll try to repeat that for DC. We are going first class which will make boarding and luggage easier. David is going to ask for a wheelchair for Capital Hill because there is quite a bit of walking. He may not want me to be saying that but I’m glad he’s asking. There is a lot of walking as I recall from last year. The last precaution we’ll take is dosage of antibiotics incase he runs a fever, that will hold him over until we return. So between the chair and the meds, I’ll feel better and less apprehensive. And let me say, thank you to everyone who has supported David in his quest to go to DC again to promote knowledge and funding for pancreatic cancer.

It's a few days later and I thought I’d add this follow up before posting. David had another round of chemo after the CT evaluation visit. This makes 2 treatments with only 5 days separation which is more trying than every other week. But as usual, he is bearing it all with a grin and a joke. Well, maybe not too many jokes, just yet. We are in Yuma. It’s warm and wonderful. Yuma has turned into our escape place. Especially right now without the winter visitors. It feels good to be home where grocery bags are freely given, straws are given without asking and gas is cheap – although not as cheap as it used to be.

A final note on the family homestead in San Diego. The front yard scape is turning out beautifully. Plants have been picked out and planted; boulders brought in and placed. David has been enjoying the progress, watching and letting me write the checks. Guess everybody has their role!

Now, go do something nice for somebody - and don't get caught!