last blog of 2019

Trying to think what to call this blog posting, farewell 2019 – hello 2020.

Yuma home: All the space is now mine. I’ve moved over/expanded into his closet area. Feels strange but nice having the room. Same thing in the bathroom, my stuff is now laid out, easy to access except for what will in the cupboard all neatly put away. His gloves and one of the caps I crocheted for his cold bald head are still on his side of the bed. Because he is not gone, he is just “Away”. That’s the title of one of James Whitcomb Riley’s poems (my father’s name sake). First couple of lines:

I cannot say, and I will not say
That he is dead- . He is just away!

With a cheery smile, and a wave of the hand
He has wandered into an unknown land, ...

Speaking of sleeping – it’s ironic that I only spent a night or two alone in our nearly 40 years together. Well, until this last year when I’ve spent several nights alone when he had gone to ER on several occasions and been admitted into the hospital

Thinking about making a quilt from shirts and t shirts. Especially the t shirts with logos and locations on them. I’m not a quilter but the idea appeals to me. I’ll have to see how many t shirts I’ve not gotten rid of yet.  I’m also sleeping in David’s t shirts – he had a lot because after chemo he would sweat at night and needed clean dry shirts to put on. So I’ve selected a couple of the really soft ones that I will now claim as mine but know that they were his.

Rings: back about 30 some years ago, not yet married; we were working in the yard one day. I found a gold wedding band. It fit my ring finger perfect. I cleaned it up and kept it. Not really thinking I’d wear it one day. When we finally did decide to get married it was spur of the moment. We went shopping for rings and found one for David but nothing fit me and we didn’t have time to wait for ring sizing. I knew I still had the “found” ring and was happy to use that. To make the rings special for our one year anniversary we got them engraved with our initials and the date. D.A.M.A. 12/31/88

Forward to late 2005: Panama canal cruise. It was an outing with our RV club. We didn’t realize at the time but David had undiagnosed diabetes; lost weight due to high blood sugar levels. You may see where this is going; lost wedding ring while snorkeling with the sting rays. That night at dinner, table for 10 (best table mates ever!). I said why don’t you tell them what you did today dear. He did. Then suddenly we were hearing 4 other stories of lost wedding rings. Every couple at the table. It was hilarious although some might have been holding onto a tiny bit of anger still. (not me). That was a wonderful cruise and every night was great fun with that group.

Wanting to replace our bands we gathered up our gold jewelry, including my wedding band and had it all melted down to create two new gold wedding bands for us. Those have been worn and not lost. Which is a bit surprising because with all the weight David lost due to chemo/cancer, his ring never came off, until I removed it. I’m sure it’s special that it didn’t fall off.

I’m going to wear David’s ring on my middle finger (not as a statement, it fits), And I think I’ll have it engraved with our initials and wedding date because we never got around to engraving our second set of rings. I’ll do something with my ring to wear but not as a ring. I have a couple ideas. That’s the thought for now, which is subject to change.

Continuing to move forward: Today I got my own credit card. Apparently, even tho I paid the bills and managed the accounts, I’m not the primary. The minute I went to the bank and informed them; zap went the cards. At least it was quick and easy and I should have my new card in 5-6 days. Then I went to Verizon because, yep, I’m not the primary on that account either. Thank goodness some time back I authorized myself to be “on the account”. I have to find an authorized store; take a death certificate to get that all changed over. Alert here – people if you are a couple and not the primary hope you know the passwords and pins and maiden names!

I’ll be getting together with a small group of friends and saying goodbye to 2019 and hello to 2020. Happy New Year.

crying over spilt milk...

Food and meals have been an issue since this pc (pancreatic cancer) ordeal (disease and treatment) began. Many of you will recall that David was our chef and I was the bottle washer. Gradually through this I became the chief cook and bottle washer. My cooking, meal planning, shopping never got up to David’s level. These steps were made more difficult as the chemo altered David’s taste buds and then his desire to eat at all. Probably a combination of the chemo and the cancer. I got more and more creative as time went on. I might stumble across a meal or food choice that David enjoyed, was able to tolerate. So I would excitedly stock up and almost immediately, it seems, that was off the menu. Grocery shopping was done as needed. Odd items began to appear on the list, anything to entice David to eat. Almost got a routine down when, along comes a new chemo treatment side effect: painful pins and needle sensation to eat or touch anything cold; diarrhea too which caused milk products to be taken off the menu. Finding protein drinks, non milk was a challenge. I’m telling you all this because what this has left in the pantry is an interesting assortment of food. Items bought special for David, items that David has always preferred, items for David to meet unique needs. I have given away unopened food stuff.

Using up these remaining items gives me the most bizarre feeling. It almost feels wrong to be eating David’s food, other times, sad to be eating his food. Ok it’s not really “his” food but I think of it that way. Some of it, I would have bought and eaten for myself, some not. It’s just weird the feelings, emotions and thoughts in my head on a daily, minute by minute basis. Nobody enlightened me about this aspect. I gotta eat, gotta shop, gotta “cook”; not my wheelhouse just another process to take on in my new world, new tasks.

Here’s another unexpected experience, watching TV. Almost the same as the weird food idea is TV shows that are on the DVR now, that I will never watch but can’t bring myself to delete and the joint TV shows that I keep thinking I need to wait for David before I watch the next episode. Like the reality show, Survivor. Maybe you didn’t watch it or even know what it is but we saw the very first season together and continued to watch – 20 years! I know it’s 20 years because it began the year we went full time RVing. And there were a few Wednesday nights when we had to be parked in a certain place and time so we could watch the show. There was even one incidence of a near incidence when we had a little trouble taking over the TV lounge in the RV park – the card players felt the TV sound was interfering with their loud gaming shouts.

Last night was this seasons final Survivor – who would be the lone survivor and win one million dollars. No matter what you think of TV and reality shows, I was not looking forward to watching this show alone. And I didn’t have to. Our niece and her family are also Survivor fans and we have discussed the show and contestants occasionally. What a real delight to be able to join them at their house for dinner and the show. Dinner was delicious (and a real balanced meal, unlike what I’ve been throwing together lately); company and viewing could not have been any better. I thoroughly enjoyed myself.

Baby steps will continue as I head over to Yuma. As I move forward in this time after David, I feel a part of me is gone forever, but an even bigger part of the me goes on; that part came about because of the us we were together. Thanks David for who I am today.

Knock on the door...

The knock on the door has come, paperwork and ashes. The stab to my heart comes again. My new world begins in earnest.

Days ago: I’m still waiting on the death certificate and ashes which means I haven’t begun the real process of paperwork and reality. Already discovered I, who am organized and thought we discussed everything turns out to not be so. Information you need for death certificate: Full name of deceased; parents’ names; mother’s maiden name; places of birth; date of birth for deceased; ss #. Make sure your name is on all accounts; authorized to speak with and make changes to accounts. Several transactions and apps are only available on David’s phone and I’m not ready to handle that.

I am forever grateful that I had the opportunity to practice various ventures voluntary before it became mandatory. Here’s a suggestion, if there is a task you don’t normally do now because your partner does it, give it a try. And if you’re a solo, you already got it down, good for you.

The chemo effected taste buds. David had stopped drinking coffee, so no missing the habit of taking him his morning cup in bed. In fact, I’m supposed to buy myself a keurig (individual) coffee maker rather than making full pots of coffee. A suggestion I haven’t gotten around to yet.

He encouraged me to go out without him, either he stayed in bed watching tv or had a friend sit with him and they indulged in movies. Either way, it has made the transition easier, I’ve already walked into rooms/parties, etc. without him by my side.

Walking the mall. Oh, the mall, my parents walked there on a regular basis, after my dad died, my mom continued to walk the mall and even had a group of mall walkers. David and I continued the tradition. And there was even the time of me walking, pushing David and then finally, me walking alone. But again, David encouraged me to go walk and shop while he stayed home (or was in the hospital). So, while it is sad to enter the mall alone, it’s not a brand-new experience. I do notice the changes and think I must tell David about this new shop or that the mini donut place has finally opened.

I will not memorialize the date of David’s death; I will remember the days he lived. He lived them well and he will continue to live on in the hearts and memories of those he met along the way, trudging the road of happy destiny.

No services at this time...

Several have asked about services for David. At this moment, none are planned. While this was a long time coming, it was also unexpectedly quick. He had been declining but anxious to complete another chemo 3 day treatment so that he could have another CT and determine progress. Who was coming out ahead, chemo or cancer? He was able to have the CT Thursday, which I’m glad for his sake, however, I’ve been given conflicting results. I’m not following up.

My heart and head are not in the mood to rehash or retell so here is the briefest of recaps. David said Saturday night, he wanted to go to ER Sunday morning. We did that, he was admitted and by Monday afternoon he was gone.

There is so much more to the story. And his story doesn’t end here. Thank you everyone for the outpouring of love, admiration and memories of David you are sharing. If there is to be any special service, I’ll be sure to let you know.

For now, if you wish, donate to PanCan, make it for David Anderson; Team: Fist Bumpers 2020. Oh yes, I expect to see a great crowd at the Purple stride walk next year. There’s probably more info I could give you on that but not now, this is my limit…

the post I never wanted to write

6:15 a.m. Dr lee calls for Dr Chan who we saw yesterday in the Emergency Room and talked with. She passed alone the important aspects of our no special care conversation. Told him I was going to a meeting and would be down this afternoon, he then called back, could they start comfort measures if they couldn’t get a hold of me. Yes. Went to coffee clutchers, cried on Gary B shoulder and then Jeni afterwards. As I drive home, Dr Zimmerman calls. He is with David and feels there is not much time. He was very sorry and didn’t realize David has declined so since he had last seen him. I called Joan to take me down to Zion. We went in the room. David held out his hands to us, we held them, I kissed him. hugged him.

Pam hospice came in and yakked about a bunch of stuff. I sort of already knew about hospice. We, including Joan, talked about Board and Care facility. Joan left to check out a couple. When Joan got back my sister and brother in law were there so Joan went on home. But how nice, she brought be a burrito and I hadn’t yet eaten anything. Barb (sis) and Bill sat with us. We talked to David. Vic, a wonderful RN came in occasionally. He helped with David’s comfort, removed the rebreathing mask and administrated morphine under his tongue. He also very softly told me some things that would happen with his breathing. I got the sense that time was very short. Oops, he also brought me a sandwich, so I did have something else to eat!

Barb and I cried and talked. Bill got me a coffee. It was sort of surreal. As Barb and I talked, Bill suddenly said, he’s not breathing. He then went and got the nurse. Vic came in to listen to his heart and it was still. His heart will never beat again. My heart will beat for us both. David will live on in me and all those whose lives he touched.

David was 71 years young (birthday 12/16); we were together 39 ½ years. We had adventures beyond belief. No regrets. Remember his smile and positive attitude and share that with others.

Its really all about me

Its all about me. Friends stopped by last night and brought me early birthday greetings. What a fun surprise. Potted plant; card; cake and cookies. The cake had the most unique candle ever. One big flame that then popped open to several small candles and played happy birthday. Hard to describe the candle effect, had to see it. It came from Arizona so you know it was special. The happy birthday song was sweet but got annoying when we couldn’t turn it off. Can you believe, one of the guys took it outside and smashed it! Oh my – well maybe they did ask first.

It all made me feel very special. A nice feeling to carry over to Sunday morning as I sit here in the waiting room for David to have his labs drawn. Brought him in with his transport chair. I am more efficient or is proficient, at lifting the chair in and out of the truck. Here’s another smart car issue, have to then wheel back up to the door to lock the car, my key was too far away. Next time maybe I’ll remember and have David use his smart phone to lock the car as we roll away. Oh technology.

Screw technology! Came out to drive home and the car wouldn’t start! Is it the key? Is it the ignition? Is it me? Getting no dash messages. Foot is on brake; car is in P with E brake on. Try a few times. Then remotely lock car (with phone). Then remotely start. It starts, I put my foot on the brake to “go” and engine shuts off. Will not restart.

Earlier had gotten a message to touch “start” with key. I do that and it starts. (after the problem of trying to get out of car, open driver door, horn sounds, other doors will not unlock, hard to reach purse in back seat for key).

Smart car – not so much…

Ok, so how is your day going?

transport chair walks

The Chair

I’m loving this warm weather in November. David came up with the idea to take advantage of it and try for a stroll at the bay. That seemed like a good idea so we (that’s the royal we because you all know it was just me) loaded up some items and took off. Middle of the day so no traffic to or from. I got out David’s transport chair and he pushed it for quite a way and then rode the rest of the way. The sidewalk is sloped and it was a bit more effort than I had thought to push. I had said we’d walk to the next bathroom but since I was in charge, turned around before we got that far.

That worked out so well that I suggested we try again today and thought I’d like to do the shopping mall. It’s outdoors and I could stop and get an item or two. So again, load up and go. I leave the transport chair in the back of the car between uses. It is so much lighter than the wheelchair but the wheelchair does push and “sit” better. From my mother I learned to pack snacks and drinks. I don’t remember us taking a lot of car trips, mostly to my grandparents in Cardiff. She always seemed to have just what we needed in snacks and minor supplies and I’ve carried on that tradition. However, it does seem we/me spend more time getting ready than at the actual outing; maybe that’s just what has to be.

These days I have to help David with his shoes and socks. It is not an easy task. I made the mistake of telling David this story. My mother saw me attempting to dress one of my dolls and I had her on her head so I could get the clothing on. My mother informed me that I would not be able to turn my babies on their heads when I had to dress them. So every time I help David with dressing, he wants to know if he should stand on his head! Isn’t he the funny one!

Eating is still a challenge, now in addition to not feeling like eating and 5 or more days that he absolutely can’t touch or eat anything cold, added on is mouth sores from the chemo. I think its more like a tenderness to his mouth and sore throat; topped off with dryness of mouth that I guess I’d say is uncomfortable. I know it makes him talk funny (but not any less!). If you’d like a better explanation – ask him. Picking up some possible remedies was included with our mall walking today.

Scheduled is chemo for November 18^th which means the pump disconnect will fall on the 20^th which happens to be my birthday. Last year David had made reservations for us to go to dinner at a nice place but he ended up in the hospital. This year, I’ll just be happy if the only hospital we see is for the pump disconnect. I can always buy myself a piece of carrot cake, Vons sells single slices of one that I like.

I’ll end with todays suggestion, along with enjoying moments, get a little exercise. Because David has had to spend so much time inactive, his legs have lost quite a bit of muscle. You don’t even realize it and then dang, you wish you had kept up some strength training. That’s why I’m not gonna complain about pushing David in the transport chair – my own form of exercise!

Thank you everyone for hanging in there with us. Love and hugs to all.

Yuma Retreat

Even just the few days we are able to spend over at our park model in Cactus Gardens is revitalizing. The drive borders on being about 20 minutes too long, it helps when we make the rest area halfway pit stop. Now that I am doing all the driving, we often just drive on by, not switching drivers which enforced a stop. I must make the stop next time.

It’s getting harder folks – no, not in the way you are probably thinking, although it is getting harder, it’s the diet. And I’m feeling a little bad because I have just reread the pharmacy guide for patients and caregivers during chemotherapy with CAMPTOSAR. I swear this was not there the first time I read it. No chocolate, hmm, like chocolate bars? What about the chocolate non dairy drink supplement? Then I noticed – no dried fruits. I guess that includes raisons and we add that to cereal when we don’t have bananas on hand. Speaking of cereal, all these years we have so diligently shopped for high fiber whole wheat cereal and that is out. I mentioned in an earlier post (this might have been a post that went missing, it was sort of interesting, no cold food, no milk products, no coffee regular or decaf, etc) about how everything we learned in nutrition classes for diabetes is pretty much do the opposite now. Finally got down all the good things to do and then thrown this guideline. And while I’m complaining might as well mention that this xerox guideline has been over copied, reminds me of crappy school instructions, off centered and hard to read. (by the way “crappy” is a good description/pun for this).

Meanwhile, Yuma, last Saturday was an 80-year birthday and next Saturday is another 80-year birthday. Plus, Famous Dave’s BBQ was having a throw back 15 years and had some great prices. Unfortunately, David was only able to eat one of his 6 bone rib plate. Thank goodness I managed to eat his remaining ribs and the mashed potatoes the next day! I’ve mentioned before and if you’ve known any folks doing chemo you know their tastes buds are affected and what they can/want to eat today changes tomorrow. The Walmart is less that 2 miles easy drive from our place so I zip over and back on a regular basis. And when I go, I try to walk to whole store for a little exercise and a bit of a break from care taking.

Many of you know my favorite break is jigsaw puzzles. We have a nice little RV park library where folks share puzzles, as well as, books and CDs. I got a puzzle for this last visit and it is going to take several stays to get it completed. It’s jelly beans and a few hard candies. What was I thinking! This has been the hardest puzzle I’ve done to date. I’ve done some that I struggled with but I do believe this one wins hands down. But so what if it takes a long time? I’m not on any schedule and I just leave it at what ever partially finished point until the next time. I can sort of watch tv and puzzle at the same time. It is, for me, a great mindless occupation. The puzzle pieces don’t seem to mind when I curse at them.

I’ll leave it here for now. Monday, round 3 of this “new” chemo blend; after number 4, it’ll be CT time again and discover what changes may or may not have happened. Meanwhile, I can’t tell you how proud I am of David. He has endured more than the average person could take on I am certain. He has been a happier, uncomplaining, more positive patient than I expected. I know, David, that your days are filled with either pain or extreme discomfort and if at any time you’ve had enough chemo in your body, I’ll support you in taking a break but I’ll also continue to support you if you wish to carry on in your warrior fashion. Either way, you are my super hero and a terrific example and inspiration to myself and others.

Dreaded Monday - or is it

This Monday was the second “new” treatment for David. last week was pretty rough so I was not especially looking forward to this week. But (keeping fingers crossed) so far so good. I had written about the first week but apparently it wasn’t meant to be shared because it has disappeared from my computer. One of these days maybe I’ll figure out why, when I name the file, I can’t later retrieve it. Oh well, its just that it documented some incidences that may have been nice to reference later.

I’m also looking to start a black market of unused meds and food. I have an entire shelf of medicines, prescriptions and OTC that are no longer needed, many unopened. Diabetes – we reduced and then stopped glipizide. David had been having some low blood sugars and that is dangerous. And if you know anything about diabetes numbers, the doctor said as long as its below 300! Whoa. That’s pretty high. You may recall David was hitting lows around 40. Omitting glip is really a relief and removes the fear of going low and the difficulty getting his blood sugar back to normal/safe range. It’s nice to have one less issue on the table.

Blood pressure medication was reduced down from two pills to one script and now that’s been stopped too. Just as with his blood sugar we monitor his blood pressure so that it doesn’t get high again. But this is another reduced issue because possibility of dizzy and falling if BP is too low.

OTC – I got MiraLAX, ducalax, magnesium citrate (liquid and pill), along with too many others to bother listing that are still being used on occasion. It’s crazy. A lot of remedies for constipation but now that this one chemo med can cause deadly diarrhea, those are on the back shelf.

Food – now here’s another ongoing fluctuation of shopping and buying. What taste good today, doesn’t tomorrow. What he can eat today, he can’t tomorrow. Several days after chemo, very little eating, just a day or two before, yeah, eating. Anybody remember or like pimento cheese spread? David out of the blue thought he’d like some. So the hunt was on, it is not a popular or well stocked item. Finally found some and David was enjoying it on celery. I was able to find a second bottle and this food phase continued. Time for the 3^rd bottle (it’s a small glass container) and I searched high and low and could not find it anywhere. I finally found another brand, different container and this one stored in the refrigerator section, not on the shelf. Nope, not the same thing, “I don’t want it”. And I didn’t particularly care for it either. Just as well, because for now, David isn’t to eat celery. So I’ve got a tub of this stuff if anyone is interested.

Someone said to me to just think of it all as a cost of the disease. I can do that but it’s still an issue. Financial, medical, emotional, the cost is too high. Luckily, so far, I can handle the cost but I do feel for all the folks who are in similar situation and are totally overwhelmed by all the different aspects. I’m only slightly overwhelmed, LOL.

I’ll stop here as I need to make another run to the store for some obscure item and be ready to get David down to the hospital to disconnect the pump. Then, depending on how he feels we may head over to Yuma for a few days of down time. Snow birds are flying in and it’d be nice to say hello.

Carry on folks, don’t forget to hug your loved ones and make moments matter. Signing off.

Team: Fist Bumpers

Team: Fist Bumpers

Purple Stride San Diego Walk September 28, 2019

My heart is so full right now. What a wonderful turnout, for San Diego and for our team. Out of 85 teams ours is 13^th in donations and we haven’t stopped yet. Almost 40 wonderful folks make up Fist Bumpers team.

Sis, thanks for the wheelchair, it’s coming back after I clean a bit of mud off the wheels! Man, that thing is heavy, lifting in and out of the car but it rolls along like melted butter on toast. I never pushed it once, I think team members were fighting over the opportunity to push amazing, optimistic, survivor David Anderson!

This year our pop-up tent was well supplied and manned by team captain Jim – special shout out for your work. I’d like to thank everyone for the various help and support that was offered today and on ordinary days too. I know some of you have family and friends also affected by this devasting disease so thanks for supporting Fist Bumpers. It was great to see returning members and wonderful to see new members. Dare I say, sign up and volunteer for 2020.

Zumba again That energizes me but wears me out a little too. The music makes it easy to follow along, well, not sure how well I followed along but I did keep moving. And if you have FB (face book) or other connections you can watch a short video and see a bit of it yourself. It’s a great warm up.

There just aren’t words to express the joy, comfort, and hope that the day gave me and I’m sure others. It must take a lot of dedicated volunteers to pull this off. Everything from pancakes, games for the kids, snacks, and the survivors’ tent where David likes to hang out. It’s a whole community, which I’m going to start calling my Purple Family. Hearing some of their stories of the short time between diagnosis and loss makes me grateful for the miracle of David now in his fourth year since his diagnosis.

Today, Monday, September 30, 2019, David begins a new chemo regimen. 5 hours at the hospital and going home with a 48 hour balloon like pump that he will then have to return to the hospital to have removed. Every other week. Side effects we’re told are a 7; current meds were a 6. Don’t know what any of this really means until we get into it. We shall see. Stay tuned for more updates. Meanwhile, remember moments matter.

There are some great pictures on FB. It takes me awhile to get the pictures from my phone to my computer, plan to share some in the future.

Doctor. labs. and so on

To our faithful readers, here’s the latest news from recent doctor visit. First off, lets get this over with, no surprise, the cancer has continued to spread. The fluid that was removed a couple weeks ago, did contain cancer cells. The doctor suggests a new chemo regimen and following is my own sort of transcript of the conversation.

New drugs: Folfzrznox (combination of 3 drugs): Fluorouracil (5-FU); Oxxaliplatin; Irinotecan (CPT-11)

Every 2 weeks and comes with a pump for 2 days. Get some by vein in the chemo clinic and leave with a “lemon” like pump. We or they can remove. It’s pretty easy, an elastic balloon. Different side effects. Abraxine might have led to fluid retention. With evidence of disease spreading can’t really attribute swelling to abraxine. He now goes over all the drugs and side effects. These side effects are a little worse, diarrhea. Imodium works, nurses will be after you and give you what you need (apparently some of this might begin while in the chair). Too many others to list – but I have the papers with details.

Doctor will check with chemo schedules (could take pump off after walk) does not want to delay starting this new chemo regimen. This comes up because Purple Stride walk is Saturday 28^th which would be his first pump removal and unsure of how he’ll feel with new meds he’s scheduled to get Thursday.

Doctor thinks this is the best choice. Alternative perp inhibitive (not sure if I’ve got this right but David is sleeping and I’m not waking him for editing), doesn’t think it will really knock it back in an effective way, less benefit. Or switch to supportive care, palliative hospice, time would be shorter but if you feel like we are beating you up, its an option. Reasonable alternative. David, “if I can rid of swelling and pain, could tolerate possible additional side effects, down for trying.” Dr Z put hospice idea out there for us to think about. Hospice would mean no more chemo. David says not yet. Sent over a recommendation for us to see palliative care doctors helpful to manage symptoms. Also gives me a name and number of his social worker for me to talk to. Dr Z says she and I will get along like wildfire. (I thought that was kind of sweet)

This ends with us going to the lab for David to have his legs ultra-sounded to be sure he does not have any blood clots. They squeezed us in. I got to sit in the room while procedure was going on. It was rather interesting. The first gal (I don’t know titles/ranks so won’t even try) was a student from Grossmont. This was fine with David, gotta learn somehow. It did take longer and then the “official” gal came in and somewhat re-scanned and did some explaining/teaching to the gal. All fine with us, new pictures of David’s insides to see. I should get a copy of all his internal pictures; could cover the walls in his man cave.

Not really much else to say at this point. We’re ok (she says with tears in her eyes). Thank you, each and every one. I dropped David off at the house to rest after this adventure and then I went off and bought not one but two jig saw puzzles. They are Christmas but that’s all they had and apparently Christmas starts earlier and earlier each year so this fits right in. The puzzles really keep my mind from going to the dark side! Between the puzzles and thinking how I can fence off part of the yard so I can foster a basset hound, I’m good. David’s ongoing positive outlook, friends and naps occupy his day.

p.s. I am responsible for any errors, emissions or misinterpretations.

See his video and story; google: David Anderson Wages Hope

see how the blooms have opened...

Another procedure and more learning...

Paracentesis is a fun word to say, not a fun procedure. Needed due to malignant ascites (fluid in belly) which David has been suffering from for a couple of weeks. Some of the delay in treatment due to doctor on vacation and the long holiday weekend. Unfortunately, this condition will return but good news, we now have the referral and number to call and the knowledge so David will not have to wait as long to go in for the procedure. If you are interested in more medical detail, you can google. Plus, we have taken a lesson from our play book and will be willing to go to San Marcos facility, if that has an earlier time and book a room so we can drive back the next day at a time of our choosing and not during the heaviest traffic.

Our play book includes the trick of booking a hotel room for our ease and comfort. We learned this when we were having some major motorhome work done. It required us spending the night in a very crammed parking lot, rising early in the morning so the technician (well, maybe the “yard dog”) could pick it up and move it over to the repair shop. We wised up and moved ourselves to the Oregon coast and stayed the remining week in a yurt; allowed us to sleep in and prevented possible parking lot accidents.

Surprisingly, yesterday, the drive from Garfield facility to El Cajon in the middle of traffic went smooth and another plus because I’m always looking for the silver lining, this procedure is a mere $25.

Alas the weight gain is over, they drained 4 liters, that’s over a gallon of fluid which is would be over 7 pounds. Might still be a minimal weight gain, wonder if it’s enough change that the pharmacy will have to recalculate his chemo for Thursday. Guess I don’t have to be concerned with that detail.

Smart phone and smart car have both got me out smarted! After only 3 years of having my own phone, I’m hooked. So when my processor went bad I had to get a new phone right now. Got a Galaxy A20 which is similar to the Motorola that crashed but not exact. Another learning curve. Only one additional trip to the Verizon store for assistance and David figured out the paring to the car. However, last night, couldn’t get the car to lock. Later I was able to lock it with the phone, yes, the phone can lock; unlock; set climate control and start the engine from afar. That is after I cam home and looked in my secret place for the password, had to reset the new phone don’t you know. But I do need to find out why it wouldn’t lock by pushing the handle button, just emitted a shrill long noise. Leaving that for another day.

We will be off later today for chemo. Next chemo treatment falls on Thursday before the Purple Stride walk September 28, Saturday. Another reason that we’ll have the wheelchair for David, he won’t feel much like walking, well, he’ll feel like he wants to walk but won’t have the energy. With the wheelchair he’ll be able to come along with us. I’ve got some folks lined up to help me push! Hope you can join us, walk, run, take pictures, donate or help push David, an amazing survivor! Purplestride.org Team: Fist Bumpers

David Anderson Wages Hope – story and videos

Caretaking Boring?

Just when I begin to reach out to occupy my time between doctor/medical visits and David’s extensive napping, my time is suddenly filled with the business of caretaking. I’m chatting with a friend (enjoying some me time) when I look up and see David walking down the hall. He looks off and is hand signaling “40”. What does that mean? I don’t know but it doesn’t look positive, so I quickly end my phone call. And isn’t it nice my friend immediately understands; says a firm goodbye and hangs up. His blood sugar was 40 (keep in mind that 70 is low!). I thought he had that distracted, unfocused look. I get him to sit down, get out the apple juice and give him a cup to drink. He does begin to feel better, even I can see the change. Now time for some carbs and check BS again, still pretty low so a little bit more juice. I then think about how we walked the mall that morning and he for the first time had not eaten his full bowl of cereal. I start to think I should have known better. (I hope you are all now saying, no, don’t beat yourself up).

I get him settled down and call my friend back to let her know – crisis averted. But not totally true. Some time goes by and David is in the bathroom and using the barf bucket. Someone asks why he needs the bucket – figure it out folks… Trying not to get too graphic.

Meanwhile, a friend has stopped by to look at putting up an umbrella and maybe a little woodwork for some shade (to rectify a big project that went about 50% wrong – I didn’t say totally). So he is coming and going and David is “going” and I am staying calm! I do the only thing I know to do which is wet a cloth and place on David’s forehead. This friend is quite capable and is letting himself in the gate, side yard, unloading, etc. He’s got it all figured out and I only provide minimally input (I knew where the twist ties were). Thank you

David is feeling better but uncomfortable from his swollen belly. We are waiting to hear what the doctor has to say. Its been a few days now and swelling hasn’t changed. I think this may be what created his recent weight gain. We’ll hear from the doctor after Labor Day weekend. All this got reported and emailed to doctor last Thursday during chemo. Neither of us remember exactly what all was discussed but we think the on-call doctor was consulted. It’s amazing how our minds take in information and later it is misfiled and unavailable for review!

Hope all of you had a more fun and uneventful holiday weekend. Even tho I’m retired, I’m sad to see Labor Day because it’s the end of summer. Just a mental thing, not like I go beaching these days.

The doctor has called; left message. Good news is the CT scan shows stable, not so good, fluid in the belly. Options will be discussed. I may send this before we have the discussion. I am working hard at not making any movies on how this episode will turn out. David and I each have plans with friends tonight and tomorrow the car needs to be seen. Oh, that’s another story. The car called us! Yep, wanted us to know the check engine light was on and scheduled us an appointment. Now that’s progress?!

Thank you everyone for keeping us in your thoughts and prayers. And don’t forget to join us at Purple Stride walk to increase awareness and funding for pancreatic cancer. Come down and turn your hair and beards purple – we’ll have the spray like last year, thanks to yet another of our amazing friends.

Donate or sign up at Purplestride.org Team: Fist Bumpers

6 becomes 8

This weekend is some family time. My father in law turns 98 years young on Friday. I really believe David's parents passed on a good gene pool to David and that's one of the reasons he's done so well with various medical issues.
Since some family is flying in from around the states and staying at a hotel near papas assisted living we are going on a stay- cation, staying at the hotel also. This way we should be able to get lots of family time and naps as they are needed. It will be easier than driving back and forth to the house, especially since this family doesn't necessarily plan our schedule like we need these days. Although even with planning David may not be up to partially visit or outing. This will work out quite nicely.
Another preparation for this was canceling this week's chemo. We thought we were delaying it but today the scheduler said no, too rough to do treatments weekly. Even tho that's exactly what we did in June when we went to D.C. for pancreatic cancer advocacy day.
Speaking of miscommunication, last month we thought after 6 seasons David would be able to go on a maintenance pill which had less side effects. Yesterday doctor visit was saying after 8 seasons. It seems to really boil down to what the next ct scan shows. Whatever, it'll be what it'll be.
Ok, time to unpack and enjoy my mini vacation!

August 8th Chemo time

It started out as a routine chemo day; got called right in for vitals and seated to begin the process. This appointment was mid-day so traffic there (and on the way home) was a piece of cake. The chairs were all full. When we have later appointment, the room is quieter and only partially filled and as it gets closer to quitting time, eerily quiet and empty; traffic not so quiet on the drive home.

It’s funny how the appointment times vary, yet we often see the same people. Most we only nod to; chat to a couple.

I was heading out to walk and get a coffee while David was hooked up and dozing in the chair. In the waiting room I saw Ann. She gave me a hug and asked how I was. That was a mistake, for some reason I got a little teary eyed so here I am with a cancer patient comforting me! She totally understood as she had previously been caretaker for her mother and another relative.  She’s been on both sides and said being caretaker was harder. That was sweet of her to say. We chatted a minute more and I headed out to the elevators. Oh boy, there’s Dr Z and he recognizes me and asks how I am and the tears start up again. Elevator arrives and he so kindly says, lets step over here. He is very comforting – without saying much. In fact, as you probably know, David can not give a plain yes or no answer. In office visits, David talks and Dr Z replies, ok, pause, ok pause ok. I figured it was because he couldn’t really get a word in but he was responding to me in exactly the same manner! Later, when I reflect on this, I just think it’s funny.

We have been so happy with all the doctors, nurses, etc. All are very caring and helping. On elevator after directions to email Dr Z; I get in some walking, two loops around the hospital and stop for a Chai Tea and back up to David in the Chemo Suite. I must have been gone longer than I thought because David has finished off his two bags of chemo meds and ready to be unhooked to leave.

We had talked about going to the mall to walk after his treatment but he wasn’t up to it I had suspected that might be the case and that’s why I did the second lap around the hospital. I’d also hoped he’d feel up to dinner out but that was also a no go. I made what I thought was a pretty good dinner, eggs, taters and toast. I’m finally using and enjoying that expensive cook ware I bought a few years ago. We watched a bit of tv and by 9:30 David had had enough and off to bed he went.

I’ll leave out how uncomfortable David was feeling along with the rush to get the “pink bowl”. It’s the ole, something to make you feel better, makes you feel worse…

Next week we plan to stop in at Yuma for a few days; check on the tiny house (not that it needs it) and say hello to friends there. The following week is his Dad’s birthday, 98 years young! We hope to attend as out of town family will be there. Unfortunately, it is the day after next treatment so not really sure how that will work out. We might postpone the treatment on the 21^st.

This wasn’t written for any sympathy or poor me, just to let you know that my wonder woman cape must have been at the cleaners. I so appreciate everyone that supports us in so many ways. We are not alone, many of you have also walked this path. Life is full of ups and downs for all of us. I find this sharing soothing plus I have my cape back from the laundry and I’m ready to tackle another day! Go out enjoy and give someone a hug!

David got me these before chemo day!

7/25/2019 posted in an untimely manner

Good morning, just a bit of an update of the ongoing drama called life. That sounds much more dramatic than this posting will be but thought it’d get your attention.

Doctor appointment yesterday (after needle inserted into his port; labs were drawn). Since Dr Z had already told us David’s scan was stable, we knew we’d get that news and a chance to look at the last 3 CT scans; with Dr Z pointing out the spots we can actually see some of what he is talking about. The confirmation on the oral chemo pills was not quite like we remember. However, when I looked at the notes I had taken on the last appointment, that is exactly what he said. 6 sessions of IV chemo before the oral pills and David is at 4. A session is a month which is chemo every other week for David.  David was very disappointed. The oral meds will have side effects but supposedly they will not be as bad. It will also free us up a bit with not having to go to the hospital for labs and the next day chemo. He will still need to do labs and appointments but more flexibility. I was disappointed to learn there is a bit of a cost associated with pills, they fall under a different category. Who knew? And now I guess I’ll have to actually read some of that Medicare stuff and find out what exactly we are talking about $$ wise. Hey, who said money is no object? I know, it’s just the accountant in me!

We are continuing to do as many activities as we can. Getting out and moving is better than laying around all day, even if it’s just a little moving. I am making a point to get moving/walking on my own. David can’t go long enough or fast enough – I’ve always walked faster.

Last night another low blood sugar scare. Haven't had one of those for awhile. I heard David say “I need help” I came wide awake. Helped him get some juice and then had to get him more juice. He was having trouble staying awake. I usually worry if he is not able to stay awake, I guess I’m getting numb to all this as I let him sleep; I played cards and woke him in the suggested 15 minutes to check his blood sugar again. Gave him a snack and he immediately fell asleep. So even though his numbers were still low (but at “acceptable level”), I rolled over and went to sleep too.

Today David spent some time with a friend, making a promotional video for the upcoming purple stride walk – which is to raise awareness and funding for Pan CAN. He is enjoying this whole process and is a good walk down memory lane. Jim, his team captain, will be sending out variety of videos over time, they'll be fun to watch. I’m looking forward to seeing them myself! David’s legacy?

We are now home from chemo. Thought we’d be able to stop for dinner but David was not up for that. This whole round of chemo is not following the previous pattern.  Wanted to get home and lay down. He wasn’t feeling well. He immediately went to sleep. Not sure if I should leave him be or wake him in a bit for some dinner. He probably won’t feel like eating but hopefully I can think of something interesting. I need to go grocery shopping but don’t want to leave while he’s sleeping. Plus, I need some ideas from him, what might set well or appeal to his limited taste buds. I’m actually getting a bit into this whole cooking thing!

To end on a fun note: It was 39 years ago this month that David and I met. And they said it wouldn’t last…

doctor sez:

RE: CT scan July 9, 2019

Mr. Anderson,

CT looks quite stable, no big changes and no growth noted.

Stable is OK. Would recommend continuing with our current plan. 

That’s the latest report. And our understanding of the current plan is that David will go on chemo pill maintenance. This would be for his pancreas tumor and the small tumors that spread to his liver. Not exactly sure when or if more IV chemo will happen first. David is pretty much “done” with chemo. This round began in March 2019. That’s about 5 months plus the 11 months previous along with the 6 months of in and out of hospital, his body has really been put through the ringer. He’s already tolerated more than the average bear! And he’s done it all with a smile.

Folks have been asking, aren’t we going to Yuma anymore. People, its hot in Yuma right now. Never our plan to spend the summer in Yuma. Summer was to be the RV traveling months. This is our first summer in 30 years with no motorhome, it’s a little different. And just to prove we are still a little crazy, we are planning to go over to Yuma to our place for just a few days. No departure date yet.

Washington DC Advocacy Day. Here’s a picture of the Texas contingency at Senator Ted Cruz’s constituent’s coffee. I’m on the right and David, on the left, sitting proudly in his wheelchair loaner. He and Ted had a touching moment after this picture was taken. (Yes, we vote Texan, ever since we went full time RV – legally domiciled TX) [sorry don't know how to turn it]

And for a real chuckle, here’s my goofy guy at the World’s Fair in 1986! We met up with David’s folks in Vancouver Canada. They were in their class A motorhome and we in a tiny pop up tent trailer, dreaming of the day we’d have a motorhome and travel the county. And we did!

Little details of DC trip

Little details of our DC trip.

Monday at our training day; we were given that age old exercise of turning to someone you didn’t know before and do a brief hello. It was a little disheartening to turn to a fellow and his last statement to me was, “you’re in for a tuff time” referring to David.

Tuesday: We picked up the wheelchair arranged through Ted Cruz’s office; intern Adam was with us for the first short portion of in the Senate Russell building. While taking the elevator, it opened on a floor and there was Ivanka Trump! We were excited and against “rules” we rode back up; got off the elevator and circled around; as Ivanka was walking down the stairs. She looked beautiful.

Noon for the group picture; met Easton who was to be on one of afternoon meetings. He told me he had noticed David’s suspenders and new immediately what was going on. He’d been through it with his dad. For some reason that really touched me; his awareness and that the losing weight; needing suspenders was a “real” thing. Or maybe it was the heat and humidity that was getting to me!

Meeting in the Rayburn building with Representive’s aide; young gal (well, they’re all young) said David reminded her of her grandfather, funny and positive. Such an interesting comment with just a brief meeting, was nice to hear. I didn’t even notice, just David being David.

Below is fellow advocate Will and the three of us with Rep. Brian Babin.

Tuesday evening: after long naps we made it to the Navy Memorial Park; band and chorale preform during the summer. Wonderful music and voices and love the color guard (with 56 flags for our states and territories) and Close Order Drill (rifle deal). And who is sitting right in the front row, secretary Rick Perry.

Our hotel, JW Marriott, is right across the street from Freedom Park. A couple nights there was music and dancing and one night the big blow up outdoor screens for movie night. And the park was packed. It was great to see so many out and enjoying free entertainment. We were able to watch from the outdoor dining; no not the movie, just the activity going on. And it wasn’t official outdoor dining but they accommodated us. We got very good service from everyone. The one oddball, freaky, item; no buttons in side the elevator! You enter your room number on the keypad and it tells you which elevator to take. You enter elevator, no buttons, and ride to your floor. Nobody liked it.

Highlights that don’t begin to describe the trip and all the emotions, efforts, etc. Always thank you to all who support us in so many ways. Thanks for walking this journey with us.

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!

David's own port

David’s getting a port!

I am excited, you all know how I love cruising and port calls are a big part of cruising. So for David to have his own port… Oh, it’s a port-a-cath for “pushing” meds, blood draws, CT dye, etc. But seriously I am still excited This mean a much easier time for David than getting a bunch of needle “sticks”. His veins are pretty worn out and as I reported, it took about 5 sticks and 3 people to get an IV started for his last chemo. This will be painless, quicker, require less staff and so on. Using the port will also speed up the delivery of one of his chemo meds. Currently going into an IV it can be quite painful so they have to slow the rate and often dilute with saline which slows it even more. This means David will not have to endure the pain or the extra time it takes to deliver. All good news.

Hopefully there will be no more surprise hospitals stays but if they do come about, the port will ease some of the constant blood checks. It may seem minor but after a few days, David was feeling like a pincushion and his veins were protesting and not cooperating.

Thursday is the surgery. He will be sedated not totally knocked out and will return home afterwards.

We already have another adventure planned (no not in the tiny truck and trailer)

We are flying from Yuma to Reno. Our fellowship is having an annual event that we both want to attend. We had purchased tickets before we knew David was going to begin on chemotherapy again. One of his treatments has been moved so he should be feeling fairly good to attend some of the conference. He can rest as needed in the room. However, let’s hope it’s a non-smoking room. They want $26 a Day to guarantee non-smoking! Can you believe that. I do believe I’ll play the cancer card on this one because the rate we are paying already!

Landscaping project continues at the family home. It is turning into a bigger job than I expected (read more time and dollars in that). It is also really turning out nice.

Speaking of the family home, the “little” bedroom is being turned into a retreat for David. An electric bed (thank you BGs); big TV; framed special prints done by our friend Nancy. (see her story here NancyRaimondiArt.com)

On the bed is a sock monkey that my grandmother made, probably 60 or so years ago. Literally made from a pair of socks, who remembers or had one. My sister and I move the monkey around the house to put him in funny places and surprise each other. So of course she had him tucked in the bed after she and her husband had set it up. The other day, David was not feeling well (read I was scared!). He made good use of the room, even tho the TV is not yet hooked up. I went in to check on him (peek to be sure he was breathing!) and didn’t he look sweet with the monkey beside him and one arm across his chest. I’m sure my grandmother would be happy that monkey was being shared, especially since I wasn’t always that good at sharing.

I’m better now at sharing, my things; my experiences and lessons learned along the way.

Chemo and Concrete 5/2/19

Chemo and Concrete 5/2/19

Who knew they went together!

Not a good chemo day, 3 pokes in one arm, 2 pokes in the other, tried by 3 people and finally they got the iv into the vein. I couldn’t believe it and I had to leave. I was feeling physically ill, thought I was going to throw up, pass out, cry or maybe all three. I don’t know if it was watching David in pain or seeing some blood! Or just what was going on I knew David was in good hands, I did ask if he’d mind if I left. I had to get out of there. I needed to pick up some meds for David at the pharmacy downstairs so that was my excuse.

. The volunteer, Sue, who we got to know pretty well from David’s last chemo visits, was there. I appreciated Sue, she said I didn’t’ need to feel bad about leaving and feeling upset, that was perfectly ok. Nice of her to say. She was also telling David to be sure and drink plenty of water, as were the “stabbing gals”. Sue also told us about her port and what a great thing that is. She uses it for blood draws, chemo, and CT. Wow, think of all the sticks that would save. And this has been becoming a problem for David, his veins are and have been protesting. He’ll be asking about getting a port.

Concrete, while not related, also got poured today. This was a bit exciting. Lots of men and noise and concrete. I think this is going to look good. It ended up being a bigger job than we had planned as the breezeway section was also included. That means we have to go out the patio door, around the house and out the side gate. Uh oh, what are these footprints right at the front? You mean to tell me that the postal carrier could not see this was new, wet cement! Why do you think there are stakes and footings and mud around? All to deliver 2 pieces of obviously junk mail. Ok, stay calm. Talk to our guy and he says, no problem they will not show up when they rinse the “cover stuff” (my words) and expose the sand top. Next day, much rinsing water etc. Uh oh, footprints are there plain as day. Back on the phone, register our concern, lets see what they can do. Meanwhile, I’m running away to Yuma, my happy place and will think about this tomorrow!

Ah, Yuma. I went to lunch today with 3 other gals. We laughed a lot. It was most refreshing. David slept most of the time I was gone, However, he did do a few dishes but then that tired him out so he slept some more. I brought him home a little desert to make up for my begin gone.

By the way, I know its concrete, cement is actually an ingredient of concrete. I’ll never forget this because I was quite chastised once by a fellow RVer. Didn’t get the big deal but also haven’t forgotten! So, go mix up come cement and pour your own concrete! …and have some fun…

Stay in One Place

Windshield. Suddenly I see my car has a long crack on the passenger side. I didn’t hear anything hit but there it is and later when I inspect, I see a tiny chip at the edge of the glass. A nuisance but not a big deal, right? Wrong. Traveling maybe a quarter million miles over the years, we’ve had cracks, chips, repairs and replacements. My biggest concern on a replacement was that they transfer our registration window sticker to the new windshield and turns out that wasn’t a problem.

So I call Safelite and have a couple appointment options in my mind. Like, why not get it replaced while David is getting his chemo. I’m feeling modern and go to the computer to schedule on-line. First problem, it won’t accept 2019 model year. Their on-line chat says oh just put in 2018 and at some point, I’m to tell them it’s a 2019. I do some more investigating and finally call a place in Yuma, talk to a person. Well, nobody does mobile replacements because the new windshields with all the safety features have to be recalibrated! What! I guess it’s not the windshield itself, but cameras etc. And that also seems to mean no generic windshields either, must be factory ordered.

It goes on from here until the insurance company calls me but I don’t need to rehash it all. It probably didn’t help that at what I thought was the end of the conversation I cut it short because we had to get to chemo. It is now several days later and the crack is almost all the way across the windshield. Monday morning, I’ll begin calling again (so much for modern on-line). Hopefully Yuma glass did go ahead and order the new, correct 2019 model windshield.

And now this is a recording of events for me to lash out at someone later. Phone calls today. Seems Express has tried to order and then got told it was the wrong price, so need to get it reapproved! And now the only glass is in Texas which takes 3-4 days to get here. We have to leave next Tuesday. My stress level rises. More phone calls, oh, now the windshield is in Washington.

Friday 4/26/2019: follow up, it’ll be 3 weeks. What! Everyone keeps assuring me that the windshield will not fall out and I can drive it until the new one is installed. Oh and if you get stopped for driving with a cracked windshield, just tell them its on order, no problem. Really? I don’t feel safe driving it; it is now about ¾ or 2/3 of the way across and is right at eye level. It gives you a slightly distorted view, unless I sit up or scrunch down a bit to look over or under the crack.

Prepaid funeral/cremation services. This is another complex complicated issue. True, it’s mainly because of our location (or lack of location). We stump everyone with our questions. Talking to places locally and in Texas and waiting for call backs. Reading information on the internet and getting more questions than answers. I’m about to wash my hands and check this item off my list even though it isn’t done. These are the things I want help with but it’s really difficult for anyone else to field these personal issues. And this is about planning for everyone, a topic no one likes to talk about but it really is necessary. Here’s my challenge for you today, talk with your loved ones about important hard issues. Like organ donation, where are your important papers, do you have life insurance, any special requests. Our special request, legacy really, is PanCAN for David and University of Northwestern St Paul for me (my great grandfather founder). The list goes on and even I, Miss Organized, don’t have but about half done. That reminds me, I have a new computer and new password sign on, better notify my designated peeps on the change.

Hey, a whole posting with no medical issues! Thought you’d all want a change of pace, now go out and enjoy the day.

Chemo back on and more

The evening of the Liver biopsy, we are relaxing, glad that ordeal is over and mentally preparing for chemo the next day. Suddenly, I remembered that David hadn’t done his blood draw, it must be done 24 hours (or so) before chemo. It’s 8pm and the only lab open and that does STAT is Zion. We had planned to do this before we left from Zion after the biopsy and we totally forgot. So, off we go. I am beginning to get good at rushing off in the car from one crisis to another. LOL. We got there about 15 minutes before they close, it’s a whole different atmosphere at that time of night. At least there wasn’t any wait.

Lab results are posted and available for viewing almost immediately. Oh oh, they don’t look good. I may not be a doctor but I know a couple red flags when I see them. To make a long story short, Liver and bilirubin numbers were high, this is not good.

First thing Friday morning David calls oncology to verify that chemo is on. After a bit of phone tag and follow up, chemo has been canceled. And no surprise, more blood needs to be drawn Monday to confirm it was just the liver biopsy that threw off the numbers and not infection or something else. The bilirubin was a concern because “they” said that wasn’t from the biopsy – guess what, google says it very likely was. Monday blood seems to confirm google as all numbers are in line. (not be taken as any kind of judgement, I appreciate the concern and follow up the doctors and nurses do, this is more to be humorous on using google, which I do Not recommend for medical advice).

Doctor does not want to delay chemo and they have squeezed David in on Thursday, April 18. This will throw off the schedule that was set up. The original schedule worked out well for a potential trip we had planned. But it’s far enough off that we’ll just wait and see how it all will fall together – or apart.

Meanwhile David has not been idle. He’s re-landscaping the front yard of the family home and adding a car cover awing in Yuma (no tall motorhome to park there anymore). Not to worry, the heaviest thing he has lifted is a phone to schedule them and a pen to write checks. There’s a story about writing checks by someone out of practice but not to cause embarrassment, I’ll leave it at that.

Last night we were in the kitchen together. Several years ago we took a diabetes class and were taught to eat 6 small meals a day, the last one protein and carbs as a night time snack. We’ve continued that practice. I jokingly told David that since he felt pretty good and would soon be doing chemo and not able to do much of anything or feel like eating that he ought to assist with the night snacks. So there we were, he preparing our peanut butter and cheese crackers and I was making coffee for in the morning. It was so pleasant the two of us in the kitchen together. I was enjoying the moment, the months of fear, worry and concern melted away. All was well with my world – cherish the moments.