The Rollar Coaster begins again...

Having a pleasant afternoon in Yuma. When the phone rings – “David we want you to start chemo tomorrow at noon”. What? We thought (incorrectly it turns out) that chemo wouldn’t start until after the liver biopsy. The gal didn’t know anything about that but would send a note to the doctor. Meanwhile, we decide to throw some things in the car and head to El Cajon. We thought (again turns out incorrectly) that David needed to do a blood draw before they would start chemo. That’s the normal routine to verify he can take the chemo (WBC count, etc); blood draw the day before.

We went directly to one of the labs that does STAT so results would be available before noon next day. After waiting almost an hour, he gets called in but its not the right blood tests. Thank goodness David asked. There were no orders. What? Much debate and discussion with staff but oncology has gone for the night. Messages were sent and we left prepared to get to the lab early the next morning.

Up and out early to the lab. Got there just before 8 and a few minutes after, we learn David’s recent labs were adequate. Who would have thought? So, there were no lab orders for a reason. And I’m glad, that meant one less stick for David.

There was no traffic to speak of on the way to Mission Valley, it was little eerie. Never made such good time, was it because it was Friday?

After the non labs we went for Breakfast at mission valley restaurant, crowded with families for spring break. Or if I dare be politically incorrect – Easter week! Except that it seems to extend over several weeks now. And this may be some of the reason for reduced traffic. We went to another restaurant, which was a slightly better choice, a little farther from all the valley hotels.

We then had about 3 hours before chemo so thought we’d go to fashion valley mall and wander. We did do that but first, we took a nap! Well, David napped and I read my kindle. And here’s some good news, since we now have just the car it was our first time sleeping in a parking lot in a car not a motorhome (but hey, that’s legal now in California!). The seats recline nicely and with our dark tinted windows it wasn’t too bad.

I don’t think either of us slept too well the previous night. I thought it’d be old hat as we’d been through the chemo “process” before. However, that might have made me more apprehensive.

Chemo suite time – it’s all still here and many of the same folks too, some remembered us. David gets a somewhat more comfortable reclining chair. The visitor or companion gets a hard straight back chair with absolutely no room. I know its not about us but really, at least a little space would be nice. It is very crowed, very public and not at all like they show on tv. There’s a couple tv shows that show the chemo patients playing cards, sitting in nice lounge chairs and only a few folks in this large room. It ain’t that way at Zion!

I take us snacks and went to get David a sandwich but it was a little too late and there was not any left. So I got him an ice cream bar. He’s been enjoying ice cream lately and for sure can use the calories. (no that wasn’t all he had to eat!)

Here is where I will attempt to insert a picture of our “starter kit”. Yep, you too can get a bag of goodies; water bottle, with the instruction to drink 2 of these upon returning home; thermometer, to check temps, critical if get ill; pill case, because who isn’t taking a bunch of pills these days; notebook to record questions for your doctor. Ta da.

Our plan is to travel back and forth between chemo and Yuma. It’s warm and quiet in Yuma which provides better relaxing. We assume chemo will be every other Friday – but as you may have noted, we’ve been wrong before. We will also be going into caution mode, staying away from public, washing, washing hands, no pot lucks or buffets and so on.

Here’s to your health and happiness. Go out and do something today that you’ve been putting off. No time like the present!

Liver biopsy scheduled -

Liver biopsy scheduled

Ok, I’m sure you all want to mark your calendars – the date has been set. This takes into consideration that apparently this will be a tricky biopsy and not every doctor is qualified or willing to do. Wait, maybe willing isn’t the right term, just because someone is willing doesn’t mean you want them poking around your liver! I think this goes along with what we learned at the surgeon consultation, because of the radiation scar tissue, an ordinary procedure can turn difficult and complicated. (remember this all my terms and my interpretation- so take it for what it’s worth).

While I take notes, later the notes don’t always make sense. I have that it will be 5 hours. Pretty sure that is 5 hours David will be there, not a 5-hour procedure. We have to check in at 7 a.m., notice I always say we even when its just David having the procedure and he’s the only one who can’t eat after midnight but somehow that usually affects me too! At least we can both have black coffee in the morning.

I know, I haven’t mentioned the date, its mid-April, before taxes. I haven’t decided yet if I want company or to wait alone. I also figure I may need breakfast and possible lunch, and may be putting out calls if I don’t feel up to eating alone.

We have made our first venture out without the motorhome. Last year at Purple Light, we took the motorhome to Shelter Island, spent the day, used the motorhome and it was very nice. This year we went in the car, did not spend the day and it was fine. Purple Light gathers survivors, families and friends who have felt the impact of pancreatic cancer. It’s a moving ceremony. Tried to post some pictures but guess not yet available.

More changes, we just sold our Thousand Trails Membership camping. We got a small amount but I wasn’t really expecting anything. We very much enjoyed and used our membership so glad we can pass it on for others to be able to utilize. We are in the process of that paperwork. I’m becoming a fan of the internet as that is how we sold the motorhome and TT, each with more than one request and relatively painless process. I like the selling on line, lets hope I don’t figure out the shopping on line!

Not sure when we will get the results and if/when chemo will follow. More will be revealed…

Which was harder to take...

Which was harder to take – the doctor’s CT scan review and prognosis or seeing the picture of Mercy (our motorhome) parked at the rest area where we stop between Yuma and San Diego with her new people and truck companion, it’s a toss-up. Well, not really, but isn’t it interesting the timing that Mercy’s new owners picked her up for their new chapter while we are getting the hard news that our new chapter will be centered around liver biopsy; genetics consultation and chemo starting in the coming weeks.

The genetics consultation results effects how we treat you, another blood test. Go through your whole family history.

First, Doctor showed up last 3 scans, no stint (June 2016), plastic stint (October 2018), metal stint (March 2019). The pancreas cancer. The “bead” which they used to target the radiation, pancreas atrophied, normal with radiation. New picture shows spots on the liver. More important, a mass around the steel stint that wasn’t there before.

Couple options: Take a biopsy to prove its cancer (one or two weeks to arrange) He’ll send some of this to Pan Can, we need to get him the Pan Can info for molecular profiling: know your tumor. He says that could be helpful (not to David but to others) It’s common that pan can spreads to liver. Worthwhile to biopsy metastasis disease.

He’ll get that set up.

Start on chemo. Another hard discussion to have. Usually 8 session of abraxane is all people can handle. David had much more than that. Not unreasonable to try it again. He then gave us paper work on the options.  Crummy side effects. Forget which one, but one of the cocktails he will lose his hair. Did you look at David’s bald head? Not much of an issue. However, I know that means, eyelashes and eyebrows, etc. It does give one an odd look but David enjoys the not having to shave.

Suggests using one or both, and then he said both eventually.

What this means, this is a hard thing to talk about. It is not curable, will eventually use palliative measures (actually this may be the beginning of palliative measures). Chemo can control it for a period of time and it has. Cancer learns to grow and beat the chemo. Prognosis, asked if we were ok to talk about it. David talked about how he already is on bonus time. On average, with treatment, about a year. And he’d be happy for David to come back in a year and tell him he was wrong.

Hey, we all know David, and I’ll take that bet!

Doc says "Hard news"

Doc says – “Hard news” that’s how the phone call started with the results of David’s latest CT scan. Maybe I shouldn’t have been surprised but I’d gotten into a lull of confidence with so many of David’s scans showing no change, and finally he was staying out of the hospital. My world was groovin’!

So, the cancer is growing and it’s spread. That’s the one thing I really didn’t want to hear. We have an appointment to discuss options tomorrow. This will be a doctor we haven’t met because the original oncologist had recently moved to another job and the new oncologist, who we met once, is on maternity leave.

Probably will be more chemo. Not looking forward to all that entails, both for me and for David. Let’s project positive thoughts that if that is the case the results will be as good as his first round.

That’s it for now. I’ll try to write more after the doctor appointment tomorrow but I may not.

Thanks for reading.

The Last RV Trip?!

The last RV trip. Is it the end of an era or just the end of a chapter and beginning a new one? Sold Mercy (our 2012 LTV on Mercedes chassis) and before we turned her over to new owners took a trip out to Borrego Springs to see the super bloom. Many of you know we have spent a lot of time in Borrego and at one time seriously thought that is where we would find our winter home. We have spent lengthy time periods and got involved in several community projects, cookie walks, pick up trash, Kiwanis Xmas boxes, ABDNHA, etc. Even though a lot of this was after David’s parents moved from Borrego, we noticed the change in times and their absence. I hope it wasn’t just the lack of access to their never-ending freezer supply of Schwan’s frozen foods!

Our drive here also allowed us to say hello to Nana and Janie (whose ashes may or may not be scattered nearby). We very much enjoyed this trip and the flowers that were starting to come out (see FB for pictures). It was also a pleasant night boon docking with a gentle rain falling most of the night. Sure sorry we missed connecting with our nephew John and one of his sons, Jude. You youngsters seem quite spontaneous but us old folks need planning.

What will it be like now that we don’t have our 4 wheeled suitcase, bed, kitchen? The adjustment from our 40’ to this 24’ went smoothly. Our adjustment from full time RVing to having a “stick and brick” place to call home basically went smoothly too. So I trust that this adjustment will also go well. I don’t know what the future will hold, we are having fun talking about train trips, airlines and hotels. Will any or all of that happen, don’t know. It’s fun to talk about. This just seems like the right time to make this change. As has happened in the past, several events/occurrences have taken place in what sure looks like fate had a hand in the planning. Even down to today, getting a call from our 24 hour card lock service (this was a life saver with Dutchy 40’ and towing the car for fuel) they’ve been bought out and we need to complete new paperwork. Guess we don’t need to do that. We did still use the service with Mercy but it isn’t needed with just a car to fuel up.

The immediate future, we are in Yuma but will return to San Diego briefly (mid March) to hand off the motorhome and David will get yet another CT with consultation following days later. And another nice timing, Purple Light, an event which gathers survivors, families and friends who have felt the impact of pancreatic cancer will be held Sunday March 24^th so we’ll be able to attend and head back to Yuma on Monday. It was a moving event last year and its nice to attend to ignite hope, send the message of solidarity and remind us we are not alone.

Speaking of consultations, I don’t think I mentioned the surgeon consult back in February. Basically, no surgery. I had finally remembered to record the conversation with my phone but it was unnecessary. I understood what was said, nothing to debate so didn’t need to re-listen to any of it.

Stay tuned as we have again signed up for the Purple Stride Walk in San Diego and would love for any of you to join us and/or support us. The walk is Saturday September 28. And prior to that, we will again jet off to Washington DC to participate in Pancreatic Cancer Advocacy Days, to increase awareness and funding. We look forward to again seeing our Texas Rep as I’m sure he’ll remember us and our connection with Escapees RV club. We hope to stay a day and see a sight or two. David gets tired easily so won’t plan doing a lot. He has also hinted at starting a “go fund me for the trip”. This is all volunteer and between the flight, room, and meals it quickly adds up. And we will once again opt to fly first class on the long leg of the flight. It makes such a difference in feeling rested and David has less energy than last year at this time after all his hospital visits and weight loss.

Lots to look forward to!