Beltane, May 1st.

We always try and have a Beltane fire on or near May 1st. In cross-quarter on the Celtic Calendar, it’s the beginning of summer. Burning away the old and planting for the new. It is between the Spring Equinix and the Summer Solciste. We had a fire the night before so that was good enough. We might have one tonight if we sit out.

This week I finished reading Jane Austin’s ‘Emma’. 500 pages of Jane Austin and it was astonishingly good. We have all the JA’s in Easton Press editions. I also reread a couple of e-books. I like the author Meg Wolfe. She used to have a great minimalist blog that I really enjoyed but I guess having written 5 books in this series took all her time. The first is the ‘Uncollected Death’. Charlotte Anthony is downsizing and is commissioned to write the memoir of a woman who then is murdered. There are 4 other books in the series which I’ve read but this one is my favorite.

I’ve moved most of my house plants( and there’s a lot), out to the sun porch. I’m going to see how they summer over out there. It does get hot out there so I’ll have to see whether this is a good option.Then I moved all the LP’s under the Heywood Wakefield so they are near the turntable. I’ll see how this works too.  That freed up a wood crate I had so I may use that somewhere else. Mostly, I’m trying to reduce visual clutter in my office room/space.  I have the one wall with Grateful Dead LP covers framed, and our Woodstock original Life magazines framed, B’s Bob Dylan poster and my favorite Star trek poster. It’s all colorful and pleasing to the eye but I wouldn’t want to add to it.

We’re doing really well food /pantry wise. I finally was able to get Costco to deliver toilet paper here although they are 14 days out for delivery. We have enough though. Plus the other big thing is coffee. We all drink coffee so we go thru  a lot. So I ordered 2 Starbucks French roast as it is on sale. It’s still cheaper to go in to the store( Costco) to get it but that would mean going into the store. So it’s worth it for now to pay the extra $5.00.

I haven’t been too creative with cooking. Mostly just cooking to get by. We even didn’t do Friday night pizza because no one wanted pizza. So we had the frozen manacotti I did a week ago. It was good. I did try making a sourdough focaccia and it was ok. Not great but I think I will try a different recipe and see how that goes.

Speaking of Costco, I checked Instacart/Costco and it looks like I can get delivery here so I may try that when I need the next round of stuff. But for now we’re good.

This morning after our walk I went into the Holiday Market an got enough fresh stuff for the week and they had tofu so that was exciting.

Next week Barclay has to go down to UCD med center to see the doctor because he needs his port flushed and another IVG infusion. I’ll just sit in the car and read although this time I may go for a walk.Last time I didn’t but I think it should be ok.

I also had my Zoom video appt with my doctor and it was quick and easy. We’re in agreement that starting treatment while the pandemic is going on is not a good idea. But we did agree when my kappa light chains get to @ 500 then that will be a good place to start. It really depends on how quickly the cancer cells start to activate. This last time it only went up 18 points so  that was quite a bit less than the time before. Really it’s just a waiting game. I’m not happy about but WTF. Not much you can do. So we shall see. it’s out there in the future somewhere.

A few pictures from around the yard

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This time of year in May everything is nice and green and so pretty. My daughter does an amazing job as gardener!

The state of affairs.

Things are good this week with 2 doctor appointments down.

B had clinic on Tuesday and I drove him to UCD med center as it was an early appointment so there was traffic.  He’s back on prednisone for a rash but it is minor and seems gone now.  I sat in the car dealing with the financial fallout from the Cobra.  What has happened is this: His group insurance ended as of 7/31 and that’s when we initiated the Cobra thinking at $700 a month that would take care of all the bills.

Ha!!! NOw UHC Cobra is still saying because he was Medicare ELIGIBLE they won’t cover the full costs. WTF????? Well, long story short, after numerous calls we are on the hook for the August appointments.  I made payment arrangements while I was waiting for him to finish up at clinic.  All his appointments from then on were covered by Medicare. But we still were paying the Cobra till actually just the end of last month( January). Not sure this was necessary but open enrollment hadn’t quite started so even though we could have signed him up with special circumstances, we just left the cobra in place.

All I can say is if you’re ever faced with losing group coverage and have to go on Cobra …DON”T.  Overall, the cost factor doesn’t cut it or you need to absolutely clear what the cover. In our case, I just assumed everything was covered.

So then yesterday, I had to drive back down to Mercy cancer center for my appointment.  It’s kinda what I thought he would say is yes, it’s going up but too soon to start treatment and to keep thinking of this as smoldering myeloma.  So it’s watch and wait. That’s okay and when the time comes and my numbers are going up faster, I’m sure we will move ahead.

Today, I’m going to do some cooking. I’ve made hardboiled eggs and I’m going to make the olive and feta topping again. Plus I ‘going to grill some chicken for lunches and dinner. I think I’ll grill some onions while I’m at it.

I have some house chores to catch up on and then I’m going to hit the gym.

 

Simple Sunday

It’s still cloudy and chilly here in Northern California. There was a big storm that came thru Wednesday and Thursday with I 80 getting closed due to spin-outs. The temperatures are supposed to go into the mid50’s and low 60’s next week so that’s better.

When it’s this chilly which is all relative, I don’t wander around outside much but I’ve decided to start doing at least 15 min outside even if it’s just raking.

Of course, I walk most mornings very early and it’s quite freezing. Literally 32 degrees, but somehow that’s just my MO.

I’ve had jury duty this week and I go one day next week. It’s all quite interesting but for me, with my IBS, I get quite nervous about bathroom access. I did fine because I didn’t eat in the morning.  I’m keeping track of what I’m eating to see what, if any, pattern there is. Plus I am somewhat claustrophobic so being confined to the jury room is a little stressful.  But I made it along with 12 others.

I’m definitely not used to being out all day and that was very stressful. My daughter made dinner both nights so that was nice.

I canceled the medical part of the Cobra so hopefully, that went thru as you do it by email. It takes up to 7 business days to reflect so I’ll be checking the online site. We did request to keep the dental and vision at least until I get that covered by something else. What do other people do? Is it AARP that has a separate dental plan and what about vision?

B was also able to get the very last of his 2019 SDI because we had the doctor say he was still disabled. It wasn’t a lot but it will certainly help.

We went to Costco and did some grocery shopping and filled the car up with Costco gas.

I read that there has been a norovirus at Yosemite from mainly people eating at the Ahwahnee so now we are decided to probably not go since we cannot even risk B getting something like that as it could activater his GvsH.  we have some time to think about it but there are other places we can go. We’ll see…..

I didn’t get to the gym today so I will go tomorrow.

 

Midweek musings

We lost another chicken yesterday. It was one of our black and white ones. I looked all over for feathers but nada. I’m guessing it was the fox since he’s coming nightly to try and get compost( it’s closed). But foxes do hunt in the day. It always makes me sad to lose one. Now there are only 4. We aren’t planning on getting chickens this year but maybe next. I think we all need a break from the daily chicken routine. But I do love having chickens though and they eat bugs and keep snakes away. Still, the morning and night routines do get old and we have to lock them up as the raccoons would get in their pen.

I’m still checking daily on jury duty but there are 2 more days and last time I did get called on Friday which was weird.

There’s still a lot of uncertainty with things financially and with B finally giving his resignation. We think now that the long term disability we were counting on for the next 5 months won’t happen since he will be retired from UNFI. He’s still medically unable to work but because he will have left UNFI by Feb 1st we think they will say that’s that then.  Has anyone had this happen or been in a similar situation and still was able to get the long term disability? Hartford has tried everything not to pay and succeeded so I’m guessing they will win on this one too.

Some good news is though Merck, the drug company, approved B getting the Tier 5 drug Noxafil for free. That would have been an initial $2000 approx for the first month. I think it was @ 1750 or around that. So that is great news.

With that being resolved we can now drop the Cobra and just do Medicare and supplementals. It’s kinda scary giving up the Cobra but really it’s been a royal PITA. Especially the prescription part.  The one thing I need to check is if we can keep the Cobra for just the dental and vision. Before with the other provider, we could but as of January 1st, the provider changed. Actually, that’s when the issues with the prescription part started happening.

So still lots of things up in the air.

Simple Sunday

It’s been a nice week although weird again with the holiday in the middle of the week. I kept thinking Thursday was Monday. Oh well, it seems that we’re back on course and today is Sunday.

We did a shop a Costco on Friday and didn’t overdo it. I bought extra coffee and TP so we won’t need to ‘run’ down there for those things. We are eyeing a new TV though. Ours is about 8 years old and still works but the sound quality isn’t the best. There are some sales for the super bowl so if I think we can swing it, I will.

B’s last SDI was this last week too. He did get a notice to have his doctor fill out a form about not returning to work, so I’m not sure if they would extend his benefits to use up the little he has left or if it’s just paperwork. What I read is the maximum award is 12months, so we’ll see. We’ll try and do that next week although he sees his doctor on Tuesday and I’m sure it won’t be in the mail by then.

This month will be the big test of how we do without the SDI. I know it’s going to be an adjustment. But at least we have no big bills in January just the car tags for the old van. Still, that’s $150. I have been saving quite a bit of the SDI so that I know I won’t be adding to the savings.

Also, we had to call on his Cobra as, just as expected, the Noxafil prescription came in at$1200.  This amount was the Medicare Part D prescrpiton plan that I’m not planning on using that’s why we’re paying the Cobra amount. I am not paying that much money when last month it was 0.00 co-pay.  So he called and the Cobra payment letter was just going out. So we did it online and then now we have to wait for it to get activated by the prescription plan. After that, we still don’t know what the co-pay will be since we haven’t reached any yearly deductible.  It’s all unsettled right now but next week we should know and hopefully, it’ll be resolved.

Plus we know that within a few months Noxafil will be reduced or eliminated so then we will cancel the Cobra and just use the Medicare Part D as all his other drugs are Tier 2. I think it’s only Noxafil that is Tier 5. What a Fucking scam is all I have to say.

Today is a gym day and we will go for our walk shortly.

Flylady zone is the kitchen and I’ll start that today but finish tomorrow.

I made a new recipe last night from another blogger( Teresa Kasner)

She lives along the Columbia River in an old beautiful farmhouse. Her pictures are outstanding. So the recipe was for Chicken with potatoes and spinach in a creamy parmesan sauce. It was good.

This week is Clinic for Barclay and our overnight trip. Plus whatever stress with the prescription stuff comes up.:(

I started a list of projects for the year and we’ll see how far we get.

  1. to drop the wood stove to floor level so that the footprint is lower and less of an eyesore. We built the platform specifically so we wouldn’t be bending to put wood in but it does take up a lot of floor space. This won’t cost a lot except added stove pipe( which is pricey) but we won’t need a lot. And some stone for the floor. Our woodstove is quite efficient and we will keep it for a few more years. Eventually, we will put in a gas/propane stove. But that’s maybe 5 years out still.
  2. We will be replacing windows in my daughter’s room. This will be maybe @ $1000 as it will be 2 windows replacing one large one. The Anderson windows we bought last summer are great and very energy efficient. So that ended up @ $800( I think).
  3. I’d like to also replace the bathroom window. Same size but just more energy efficient. All the windows in the house we’re replaced when we remodeled but they are now 25 years old so an upgrade will be nice.
  4. I don’t think we will get to any bathroom remodel this year.
  5. I think we are going to try and redo some of the kitchen. The biggest thing is the counters and sink( pipes underneath) really need to be redone. Getting a new pantry system from Ikea will be first on the list as that will be freestanding.

There’s always garden work and yard work. That’s kinda ongoing.

Barclay’s official retirement date is January 30. That’s 25 years. It’s hard to let go of, I think, because of the way it all happened with him getting sick. But how incredibly lucky we are for modern science that has given him a new chance without cancer. Even I can’t say that, although I have been extraordinarily lucky that my Myeloma has responded to treatment. Well, it is what it is.

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This was our dinner the other night. A small piece of filet mignon and a Beyond Meat sausage( which are delicious BTW).

 

 

As 2019 comes to a close

It has been a year of highs and lows.

Lots of things were awful with B’s diagnosis and then being transfusion dependent. Lots of chemo visits weekly. But in spite of that, there have some great things. His brother was a 10/10 match for the BMT and that was amazing.

Being at UCD med center in the BMT unit for a month was hard, very hard, but it all went way better than expected. Staying at the Kiwanis in our friends RV was also great and made the whole experience of having to be there almost 3 weeks delightful. Being able to be just minutes from the clinic made it all worth it.

Recovery and gaining strength and energy back has been slow but sure. B is doing amazing and he is almost 7 months post-transplant.

There has been no major graft vs host although he must remain vigilant as that can happen even down the road.  Now he is tapering off immunosuppressants and that means less prescriptions. He will still need his vaccinations sometime next year.

So the year really was a mixed bag of emotions but overall I feel very positive about it. We did fine financially with the extra GoFund Me and the SDI. This week will be his last SDI and I am totally grateful to have had NOT to worry about money. After my transplant in 2006 and that following year, we were in serious,serious debt and it was awful. There were no GoFundME things or networks to receive financial help. I did have 2 friends that were very generous and that was a blessing.

At the end of this year, I feel grateful for my health and my children’s health. Both of my children have excellent jobs that they earned this year.

B will also officially retire as going back to full time just isn’t going to work for him. I will miss the paychecks and being able to travel with him, but honestly, he is 69 and with everything that has happened, life is just too short to go back to a job even if it’s only for another year. Who knows what will happen and he has this chance to retire. Social Security will be tough but hey, so what! We have struggled before and made it and if we can only do so much then so be it. Actually, I’m just grateful we have the little we will have coming in as it will cover our basics.

WE didn’t do any traveling and that was okay. We are planning something once a month for  2020. Next month we are planning an overnight to Chico where B has a free room at one of the nicer hotels downtown. We are planning to have dinner at a place I’ve wanted to go forever called the Red Tavern. I can’t remember where I read about it over 5 years ago, but it’s supposed to one of the best restaurants around.

House wise, we didn’t do anything major except outside and tree removal.  We did replace two windows and they look great. Next year we will replace a few more windows in the bathroom and kitchen and my daughter’s room as well. Next year, we hope to work on the kitchen and do a minor remodel( mostly the sink and counter as it is 25 years old this summer and the sink connections are pretty rusty.

So life keeps on keeping on and it really is a wonderful life.

Friday the 13th

I love Friday the 13th. Mostly, I just like the number 13. Why? I have no idea. Well on to 5 on Friday or maybe even Frugal Friday.

Our trip to Trader Joes was not frugal but did get almost everything I need for Christmas dinner and just holiday eating. Think Brie, crackers, pub cheese, etc.

I still need the lasagna stuff but that’s an easy Safeway trip.

It’s raining today but we did get a walk-in with our umbrellas. It was only drizzling so not bad. I’m planning on going to the gym and then maybe an errand.

Barclay is going to officially retire at the end of January from UNFI. That’s his 25-year anniversary. It was a hard decision, really but I think the right one. His HR said though he needs a medical release to return to work from his doctor and then he needs to be reinstated in order to then retire. It seems like a lot but I guess they have rules. So that’s what he’ll do.  He also is going to check about the long term disability that he could possibly get for a few months but that’s pretty iffy.  I guess we’ll find out soon enough.

Tonight is pizza night and I’m doing homemade. It’s still raining:(

BTW, if you’re looking for a good murder/mystery series on Netflix,  Le Foret, which is in French with subtitles is superb and the companion series ‘the Black Spot’ is terrific. Excellent characters and the scenery, shot in France and Belgium is great.