Well, not good on the labs.

Well, I figured another increase. Up to 239.9mg/L from 176. So another almost 70 point increase. Lamba went down to 10.2mg/L so of course, that means the ratio went up. Up to 23.4 mg/L.

The bigger news is now there is finally a monoclonal protein showing:( it’s at .3  I haven’t had a M protein in over 4 years so that is a bit unsettling.  Well, as I’ve said, the blood tells the story. Not much I can do about it except plan on the timing of Chemotherapy. I’m guessing when I see him at the end of August he will still say, wait.  I’m predicting by November/December will be a good time to start.  If you figure about a 70 point increase each 8 weeks, that puts it at 4months apprx.

This will be my 4th relapse( well technically my 3rd, since I counting when I became refractory to Revlimid and started Pomalyst.) so I guess I know the drill.

 

Catching up

We got the tree quote and it came in at a good price. Plus we’re adding in having the very large oak that hangs over the barn trimmed. That will cost $1,000 but partly that’s because he needs to bring in his boon. I’m good with the cost and it’ll be a relief for the big tree to go. We still have the 2 other leaning Ponderosas and the one that leans toward our neighbors is a concern as the soil there is much softer as it is downhill. But I just cannot deal with that right now.  If it gets worse, then we will need to do something.

I had an exhausting trip to Costco but I got almost everything I wanted/needed. Of course, the next day I realized I hadn’t used the coupon that was tucked quite nicely in my wallet and I didn’t see when I went to pay. Oh well, next week maybe. Costco seemed to have most everything except no liquid hand soap or Clorox wipes. I have plenty of regular CLorax that I can mix with water if I need to make up a disinfectant.  The hordes were after toilet paper that apparently you have to make a beeline for the minute you enter the store and the meat counters were crammed with people trying to get stuff. I didn’t need any meat at all so I avoided it. I suppose I could have bought something as back up but I think with what I have, we’re good.

B’s biopsy came back great. No blasts, no MRD disease, no sign of MDS so that is really a gift. Hopefully, this GVHD will get resolved with the new drug. But since it is so expensive and they are( well, the hospital aid fund) paying for it, that it will do the job and then he can get off it.

I’m planning on driving down to see my doctor at the cancer center instead of doing a video chat. I just want to touch base with him and get his impression of my light chains going up so much. It’s not a good trend and I really would rather start Velcade than risk fractures or other horrible things. There’s no guarantee about anything but at least it’s the logical thing to do. I really hate the thought of dealing with dex and pretty much losing 2 days a week but at some point that will be the reality.  I can tell though, my energy shifting and I’m more tired and less energetic.

I also have my delayed dentist appt at the end of the month to replace a crown. Not looking forward to that.

Such strange weather we’re having. It’s hot then cool, then hot again. Today it’s quite cool and we even have a twinkly fire going just to warm up the house. Weird.

http://magnonsmeanderings.blogspot.com/2020/06/j-k-rowling.html 

I was reading this guys post as he’s on someone’s blog list that I read( I read lots of British blogs), but he was commenting on JK Rowlings’ comment about transwomen and I really flipped at what he was saying that he agreed with her that whatever sex you’re born that’s what you are. Really? How narrow-minded. Trans women are women and trans men are men. Period. He also said he had never read Harry Potter or seen the movies and I thought how weird he’s got this appreciation for JK R and hasn’t even read her stuff but when she goes off the rails about trans women he’s all for it. What astonished me is his comments were all agreeing. Well, I commented he needed to learn about transgender people and that it had nothing to do with ” the clothes” they wear. ( He was saying they can dress like a woman but they’re not real women). Anyway, my comment posted, and then, just like that, he took mine down and the other person who also tried to clue him in.

Go check it out.

 

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.

Friday Stuff

I’m not sure that Frugal Friday works anymore since groceries are much more pricey and I’m still buying to build up the prepper pantry.

I added some Bob’s Red Mill polenta to the pantry in the vacuum seal bags. Also in the Costco home delivery order got the 2 pack of Lemon Juice, Rosarita beans, and a case of their corn. I have a Costco Instacart order ready to go but will wait till next week.  That way that will take me almost into June. Oh yeah, they had SAF instant yeast and I also got some really nice powdered cocoa for baking.

 

For the prepper pantry, I’m making a list of dinners that I could put together from what I have to see how many months/weeks I would have. I have some combinations of dinners we eat normally like beans, tortillas, salsa, pasta with sauce, rice-based meals.  Mostly, I’m trying to have meals that we normally have so things aren’t weird like Spam for dinner:(  From the freezer, I am adding some meals like chicken, or organic beef, but that would really be stockpiling unless I bought a 1/8 of a cow from a farmer. If I knew someone that did that I would consider it. Right now, I’m good with Costco’s organic ground beef and chicken.

In other news, Barclay is continuing to have GVHD with intestinal stuff and skin rashes. His doctor ordered a new drug call Jafaki.  The drug is enormously expensive and the co-pay was coming in at $1500. a month. ahh, there is no way we can pay that now we are on a fixed income with no extras coming in. Our Medicare prescription plan had it for slightly less. So he talked with the financial coordinator and UCD Medcenter gave us a grant for $7000 that is JUST for the Jakafi. Let’s hope this does the trick.  Tomorrow is his 1-year re-birthday and I would really like to have the GVHD be gone. Well, I guess we will see but at least we’re not going bankrupt from a drug cost.

Today we walked and it was refreshing. I have the pizza dough ready to go in the bowl. I also cut up a whole bag of Vidalia onions to freeze.  Last week I made the mistake of trying to make a larger pizza and it was not good. It was too big for my pizza steel and was a mess. It tasted fine but it was falling into the oven because it was too big. You’d think I’d learn:(  So this week it’s back to 2 pizzas.

I just finished reading Adam Savage’s ” Every Tool’s a hammer”. He’s the guy from Myth Busters.  Quite interesting.  Check it out.

 

 

Thunder and lightning, oh my!

We had a huge rain cell come thru yesterday in the afternoon. There was thunder( a lot) and lightning, hail, and torrents of rain. Quite the spring storm. There was snow in the Sierras which is not that unusual in normal times. Well, everything is soaking wet.

We just got back from a nice walk. I wanted to do another round but nature was calling or maybe it was my cup of coffee so we left. But it was really nice and fresh out.  All the geese families are getting big.

Our chicks are getting big too and the others seemed okay with them but the 2 Auracana are being mean to the black one so we’ll need to see if we have to separate them more. It’s a pecking order but they can do harm to an outed chicken so we don’t want that.

Barclay has labs today and then a video conference. This time last year he was in UCD med centers Bone Marrow Transplant Unit getting chemo conditioning for the actual transplant. A whole year has gone by, wow.  Except for ongoing GVsH intestinal stuff he’s doing well although still too thin.

Then tomorrow he has to go down to UCD med center for a urology appt with a new guy. My daughter has volunteered to drive him down. It shouldn’t be a long wait and I suggested she pop over to Corti Bros. We could use some Mikes Blend meat for chili or burgers. I made the burgers with the Crowd Cow burger meat and it was good. I’m not sure I’d say exceptional but I’ll wait to make a final evaluation after I make the chicken and the one steak I bought.  It was delivered quickly and with dry ice, so that kept it all frozen.

We’ve been having game night on Wednesdays and here’s one of the games that is hysterical to play.4839DF99-8862-4F19-A414-BF84DD9E2496

It is not for children so be aware.

This is one of the cards that I thought was beyond funny.

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too funny:) You kinda need to be where we are to appreciate it.

We’re planning to do take out Mexican tonight. The first time in 3 months. Hope it’s good and safe:(

Oh, and our idiot president is taking Hydroxychloroquine.  What a complete idiot. How can we even have a president that is so stupid? It is beyond me.  Good grief, Charlie Brown. Vote Blue, no matter who so we can move on to some sense of normalcy. Or at least someone who isn’t a third-grader.

 

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!

Five on Friday

It was a beautiful week here in Northern California. Yesterday was 75 degrees. It got breezy in the afternoon but still nice. It’s supposed to start raining Saturday and go almost a week with snow in the Sierras. Well, we do need it but the sunshine and perfect 70-degree weather is hard to beat.

We are exploring different places to walk, so yesterday we went into Auburn and had a coffee at Depoe Bay( which roasts their own beans) and then walked around. We went up to the Gold Mining Museum and looked around and then walked the sidewalks. It was nice and I was surprised at the different routes we could take that would add up to a few miles. So, we will do this again after the rain stops.

I’ve decided to stop going to the gym and just walk and pull out my 5lb weights. Even though Sundays are the lowest people day, I just can’t risk it.  We are in the high-risk group. I am concerned with either of my Adult children who do work in the public sector bringing something home but I guess that’s the risk. They do wash their hands frequently and are quite conscious of what this means to us.

Budget wise things are good. I have way overspent on stockpiling stuff but I just figure that’s a one-off for now. I do still need a few things like cat food for Finwe who is a very picky eater. We also had our bi-annual Allstate bill come in. For 3 cars it was a little over $1,000. Seems expensive. Even our old Dodge van was $290 for 6 months. It seems high but I like Allstate and we’ve had them for 40 + years. This is the type of annual bill that will have to be paid out of our savings as the regular income only covers monthly expenses.

I did request a form for UCD financial help since the medical bills in August are what is causing a headache. Especially since the August 30 bill is for the Cystourethrocopy when the Cobra insurance wouldn’t pay the full amount. That alone was almost $4,000 with our part being over $1300. So I’ll fill out the form and see what happens if anything.

Well, today is not a walk day at least right now at 6:30 am, maybe later.

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.

Stuff

What a week!

The colonoscopy went fine although there were polyps so I will need to do another in 3 years? 5? not sure, as I haven’t gotten a message from the doctor yet. Oh well, the best-laid plans of mice and men:(

Now I’m feeling under the weather. I think my body just saying enough already and to rest. On top of the 2 days of jury duty last Thursday and Friday, then the colonoscopy prep on Monday and then out the door Tuesday at 6:30 am, all a bit much for me.  So today I’m just going to take it easy and drink lots of lemon water.

I am going to make marmalade although no one locally has Seville oranges. I’d probably need to go to Whole Foods down the hill and I’m not doing that.

The budget is set for February and I did take cash for groceries for the week.   I’m going to budget $125 a week. I went to Target yesterday and bought slice cheese and a few other things but other than that haven’t spent any extra money.

We were thinking of going to the coast but now it looks like it’s going to be a little too cool so probably not. Cool is around 50degrees.556B21DA-3A6C-409A-855E-C00C782CA2F6.jpeg

This was one of my Christmas presents as I’ve always wanted a French candle. Clearly not frugal but lovely. Would I get another, No! It had a lovely fragrance but the cost didn’t really justify that. Well, now it’s a pen holder. I also have always wanted a Jo Malone orange blossom candle. it’s in the same price range so probably not.

I have an appointment for my labs tomorrow. Oh, joy another test. Probably not good news so, WTF, right?