Friday things

well, not good news on my labs:(

My kappa light chains went up to 176mg/L so a 66 point increase.

Lambda only to 13. mg/L ( normal as I am not Lambda myeloma)

ratio up to 13.44 so a 4 point increase.

Not happy but what can you do. I will see my doctor at the end of June. Not sure if I’ll do the video conference or just go down to Sac. Probably I’ll go down. I mean he isn’t going to start treatment yet anyway, but I’d like to check in physically.

We’re still looking at when I hit 500 mg/L so that maybe January. Or if things speed up sooner. You can’t really tell how it will go except it won’t go down.

I won’t lie that it doesn’t upset me but since this month is my 15 year since diagnosis( I’ll write about that later), you do get somewhat hardened to the fact that remission isn’t forever.

Other matters, B had his BMbiopsy Wednesday and was pretty loopy from the drugs but he said it went well( if enduring one of the most painful procedures you can go thru, can be ok).

I haven’t done any grocery shopping since the Costco Instacart last week. But I will go tomorrow as I need salad stuff and milk. I’d like to get to Trader Joes maybe next week.  I guess it all depends.

We’re in for a cool down here in Northern Ca. It’s been hot but not 100 degrees hot, just 95 degrees hot.

I read in the WP another Confederate statue was taken down. It was some Admiral. They did it either at night or early morning and it was whisked away. Good Riddance.  I also read that Lafayette Park where the peaceful protesters were attacked by the police used to be a slave market. One of the biggest. maybe Trump should read( ha ha ha) some history about the cruelty of selling black people.

That’s all I’ve got.

Simple Sunday

It’s been a nice week with really glorious weather. We’ve eaten dinner out on the patio and it’s been great. The mosquitos are coming out though so that’s a pain. Just when it’s getting nice enough to sit out after dinner, wham, mosquitos buzzing. I guess I ‘ll try and find the bug spray today.

The chickies are growing and going outside in a new cage on the grass but still coming into the dog crate at night. They have t least another month of going back and forth and then they will still need to be separated from the big girls for a while. Getting chickens is actually a lot of work. But by September we will start getting some eggs so that’s nice.

This week I have my doctor’s appt and I will be doing a video appt. I’m not sure how they set it up yet but should know tomorrow( Monday).

I went down to our Holiday market the other day when they opened( 7 am). Spent a small fortune but got some extra things for the prepper pantry. Ever since we moved to this area in 1975, I have been a bulk buyer. Beans, rice, honey, oats, etc. We had a small co-op in Auburn at that time and we could order stuff. We also did a buying club with what is now UNFI( That Barclay just retired from after 25 years). It was Mountain Peoples Warehouse then and you could order bulk things even dairy like cheese. Then a group would get together and separate out orders.  I don’t think they allow buying clubs anymore but I could be wrong. Anyway, that’s what we did. Somewhere after embracing a minimalist house, I started backing off on having a prepper pantry. I still would buy Lundberg brown rice and a case of tomatoes from Costco but I had been trying to back off it. Then all this Shit hits with Covid-19 and yes, I am back in buying bulk in full swing.

A prepper pantry though just isn’t bulk rice but enough food that could last you anywhere from 3 – 12 months. Now I don’t want a bunker with guns and food but I do want to build up my pantry.

Some stuff I’m putting out in the barn on the restaurant shelves( stainless steel). Extra dish soap, laundry soap, canned goods are going out there. Some packaged goods are going in bins to store. I’m planning on buying a food preserver thing that seals the contents of the bag but I want to wait and see what Costco’s looks like before I commit to it.

So far my plan is to have a dozen boxes of Pasta, a case of kidney beans, a case of cannellini beans, a case of refried beans, a case of tomatoes, and other smaller quantities of condiments, sauces. Mostly stuff I know would eat normally. I did buy 8 freeze-dried meals but I’m not sure about doing that again as that is not something we would normally eat.  I’ve been meaning to try one just to see how it is. Also a couple of boxes of tea and sugar. I keep some extra coffee in the freezer but in a shut down that wouldn’t last long. Maybe I’ll check into instant or freeze-dried coffee as a backup.

Right now the freezer is being eaten down and I haven’t bought a lot to replace things till I get to Costco which I’m thinking will be mid-May.

Dinners have been uninspired like spaghetti and sauce, meatloaf( I bought as I don’t know how to make a good one), rice and beans, grilled chicken, salad, and just normal stuff.  Tonight I am grilling chicken outside and will make a potato salad I think. I made a nut loaf with brown rice yesterday so I will serve that to B.

Well, life goes on, or as the chaos theorist in Jurassic Park says” Life finds a way”.

Flylady has two zones this week. Living room zone and entryway zone. I did the living room already but still need to vacuum.

 

Keeping on…

Things are still in lockdown in California, for which I am grateful. Gov. Newsome is doing a great job of keeping ahead of things with basically shutting everything down. I honestly don’t get the Trumpers hating him so much when all he is doing is trying to take care of California. The negative comments on the local the newsfeed on Facebook are nuts.  Crazy!!

Since I’m an introvert and don’t go out to movies or things often it hasn’t bothered me to be home except maybe going out for coffee.

The park has posted signs to walk 6 feet apart and the playground is now taped off. I’m guessing the park is getting overwhelmed with people trying to just get outside. Since we walk early there is only the new dog walker guy and he walks very fast and not near us. He’s been coming for about a month now. Many people over the 8 years I’ve walked there have come and go. It changes with the seasons too. Lots more people as the weather gets nice. So we always start backing it up and going earlier. In summer even 5am is not too early.

I made some more oatmeal chocolate chip cookies yesterday and they are almost gone today. Humm…rationing  next??  We had fun individual pizzas last night although my son said each person was supposed to top their own. I did it because nobody was coming in to do it.

Tonight I’m making some chicken tenders with pasta on the side. I  think I even have some Quorn chicken tenders for B. I don’t have any salad stuff but I do have chard in the garden I can use.  Oh, BTW, Amazon prime has Julia Child’s the French cook original on and it is so fun to watch. It’s in black and white which is too bad since you can’t’ see the browning and sauteing she describes. I’ve actually learned a thing or two and I wonder how much I saw originally as her style of cooking is similar to mine although she is maybe a little more strict. Anyway, check it out as it’s fun.

I haven’t really started any projects except working on notes for a “prepper” pantry. I was trying to move away from stockpiling but now, no way.  If anything I’m going full throttle. Yesterday, I ordered from Mountain house which does freeze-dried stuff.  They didn’t have the #10 cans I wanted( all sold out) but they did have some servings of 2-3 available. I bought some to try and of course, they really last forever probably.  I’ll give an update when they arrive. Also, I’ve ordered from Costco, but they are sold out on most things and some they are not shipping to my zip code right now. I wanted a case of Rosarita’s beans but that’s not available as of yet. I’ll do a write up down the road when I get it together.

I need to schedule my labs for next week or maybe the following week. I don’t see Dr. Laptalo till the end of April and even then if things are only the same( my numbers going up but still not starting treatment), I’ll ask to just pass on seeing him physically.

BTW, Finnie seems to be doing better and eating a little more. I’m still not sure how long he will last but at least there has been an improvement.

Oh, and I think we are going to get some chicks as we know we’re not going traveling anytime soon so we will be home to take care of them.  I may order online so as to avoid the feed store though.

Well, I hope everyone is staying safe and healthy.

 

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.

 

Friday Stuff

Happy Valentine’s Day!

We don’t do much special since I hate crowds and would not even consider a dinner out on VD day. I did buy some nice carnations at Safeway and some roses at Costco so they are on the table looking pretty.

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It’s been a maddening week trying to get a camping reservation. Every single morning ( including today) I have been on the computer at 7am on the dot( watching the second hand) to reserve a spot and absolutely NO LUCK!

There are so many people trying to get reservations for August that it’s almost impossible. Today, I’m trying for 5 different spots and not sure if that will slow down the computer. But if I don’t do the 5 then there’s no chance. I’ll update after 7am.

NOPE>>>>>NADA>>>>>ZILCH

Let’s see what else. Barclay had to go back down to UCD med center to pick up an immunosuppressant drug because he’s had skin itching and slight rash.  That’s the one he’s been off of since December so they don’t want any GVSH happening.  We’re also dealing with medical bills from August that the Cobra was supposed to cover and they don’t have it straight. I’m ready to just chuck it and make payments. We’ve been trying to get this squared away for months and they just aren’t getting it.   They keep saying he had 2 insurances but he didn’t an only had the Cobra. What a PITA>!

I’ve applied to the LLS for my grant for 2020 and that will pay my AARP supplemental insurance.  They do such an amazing job and I’m grateful for the grant. If I ever have to go back on Revlimid they would help with that co-pay as Revlimid is a tier 5 drug and runs about $20,000 a month. With insurance you need to go thru the donut hole and then still it runs about $1500 a month.  I can’t see me going back on Revlimid but who knows.

Speaking of which, my labs came back very disappointing. They almost double!! ( well the Kappa light chains did) so that is a very bad thing.  I see my doctor next week so I’ll see how he sees this change. My ratio went up too but still is overall low at 6.58 mg/L. It’s the ratio that is more important. Still, it freaks me out that myeloma cancer cells are activating and multiplying. WTF….  well, I knew it would happen sooner or later as Multiple Myeloma is incurable but can be held in check.

Today I’m just planning on staying home and doing somethings around the house. I need to mop the kitchen floor and wipe the bathroom.

Tonight I think I’ll make a pizza Margherita although I ‘d need to run to the market for some fresh basil.

Simple Sunday

It is quite windy but clear here in Northern California. No rain on the horizon but the north wind is making it very cold.

The moon was big and bright to the west as we walked in the park. I only did 2 rounds as I wanted to get back to try and get on Recreation.gov to reserve Nevada Beach in August. I got back and on the computer by 7: 05 am and everything was gone. Oh well, I’ll check tomorrow.

My fractured rib area( old fracture, not new) has flared up again and is very painful so I am going to skip the gym and put Arnica on it. It started( about 2 weeks ago) when I had the very minor cold but I did cough and that always does it but yesterday I must have turned the wrong way and pulled the muscle. I think I first had this rib fracture after my first relapse in 2010 0r 2011. But last fall it acted up again and I went for an x-ray, so I know it’s not new but the old “chronic fracture area.  Very bothersome and limiting which I hate. Unfortunate Myeloma does affect the bones and ribs are always a target. I’ve read of people having a bone spontaneously break and that must be awful.

This week is the bathroom zone so I’ll try and limp thru that.  Other than that I’ll be home reading or just sitting.

I’m planning on making a mushroom ragu over polenta and a meat ragu for those that want it. I’ve been making the polenta in the Instant Pot and it works great for that if you’re interested.

We had a coyote come right next to the studio where my son sleeps and he got a chicken. It was at 3pm in the afternoon. Very bold coyote to do that. I’m thinking seriously we need a dog as dogs will keep coyotes away for the most part. This was very close to the house so that’s really bold and unsettling.  I’m still undecided about getting new chicks this spring. I think I’d like to take a break with the chickens but then again they do a lot of work in the yard. Of course, if they’re out free-ranging there’s obviously the risk of coyote or fox.

 

 

Simple Sunday

Whew, jury duty was brutal. We ended up a hung jury as one juror was deadlocked. I at first was on the not guilty side and then after reviewing all the evidence went with a guilty verdict. But it didn’t change the outcome as a mistrial was declared. Not sure how the lawyers proceed but that’s not my worry. I was completely wiped out by the end.

It’s raining here quite hard so no walk today. The Frogg Toggs I got for Christmas needs to be returned as they don’t fit quite right. So no walking today unless it lets up( just checked weather and no letting up).

I’m planning on going to the gym today as tomorrow is my prep day for the dreaded colonoscopy.  I’m sure I’ll get thru as I’ve clearly been thru worst.

I need to get my labs done this week too and think I’ll plan on Thursday.  I see my doctor in February(middle) so there’s time but I like to know my results before. If it continues as it has been my rise should be around 11 points taking me to @ 65mg/L Kappa light chains. The ratio will probably go up to. I actually feel ok but Myeloma is tricky that way and that’s why some people don’t get diagnosed till a fracture like I did. Well, no sense worrying about that now.

Yesterday I made lovely baked potato soup. It came out great. I used the Vitamix to blend and it came out very smooth. Tonight I’m making breakfast for dinner to keep it light. Just scrambled eggs, maybe pancakes and/ or toast. I might do some of Adelle’s chicken sausage as I need to use that up.

 

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).

 

 

Another PG &E blackout

We had another PG&E blackout start on Wednesday around 2 pm and this one lasted till Thursday @ 4pm. We ran the generators and kept the freezer and refrigerator on for about 4 hours morning and 4 hours evening.

Now they’re saying there will be another tomorrow into Sunday. This is ridiculous. Yes, we want to be fire safe, but once again there were hardly any winds. Now, this weekend I did see 25mph winds so that is quite windy and I would agree with the shutoff.

Well, we made it thru and even enjoyed a good game of Scrabble with my daughter by candle/lantern light.

Yesterday was my oncology appt and it went ok. Nothing really new. He just said the same that we’ll wait till my numbers are higher. Now it would be more akin to wait and watch. I agree for now but we’ll see what my labs are in December.  Well, it is hard to be anticipating the what-ifs. Oh well, cancer has taught me to be more patient and what will be will be.

We did a small Costco trip this week for coffee and a few other things. Not a big shop. I also did the Walmart pick up. That had so things for the blackouts( more flashlights) but they were out of stock on those.

Today is a gym day and homemade pesto pizza for dinner assuming we have power. Most people it seems have bought generators and you can hear them going all around town. Our grocery store even got a commercial one so they could stay open.  We need to fill up gas cans and cars before this weekend and hope for no fires. The one over in the Sonoma area was started by a transformer so that is super scary.

 

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Midweek musings

I had a good doctor visit. As I mentioned, my numbers are going up (kappa light chains) but as he said it is slowly going up and I’m a long way to where I started out 3 1/2 years ago at 1010 mg/L kappa light chains. So I’m ok and not panicking. It went up 6 points to 31.7 so an increase. Lambda is in the normal range and looking back at my numbers, Lambda was always in the normal range. The ratio also increased to 2.66 from 2.33 so increase there too. When I went back to when I started Velcade my ratio at it’s highest was 68.25 mg/L so that says something about where I started.

All in all, I’m ok with it for now. It’s always weird to think cancer cells are in your body but one must be positive and philosophical at the same time.

We’re in for cooler temperatures which will be most welcome.

My daughter is drying some cherry tomatoes since we have so many and I really don’t want them to waste. Sundried tomatoes in the winter are nice additions to pasta.

Our last appt is Friday till next week. Driving to Sacramento has been awful with the traffic. Driving home has been a lot easier. I’m guessing with school starting and work there are more people on the freeway.

After next week, we are on a 2-week clinic schedule and that will be very nice.