It’s a Struggle…

Honestly, it is hard at times to be positive about having cancer. I can compartmentalize most of the time and I do. But then when labs come in and you have to face the reality it is hard.

I was diagnosed with Multiple Myeloma in 2005, had the autologous transplant in 2006. I know how lucky I am to even still be here but it doesn’t make it easier. I relapsed in 2010 and actually did great on Revlimid ( aside from it causing severe IBS) for 5 years and then that stopped working. My kappa light chains went up to almost 1100mg/L so pretty high and my ratio was way up at 92mg/L. Velcade or bortezomib is a proteasome inhibitor and worked astonishing well. Within 2 cycles my numbers were almost in the normal range. And that has lasted 4 whole years.

I have no complaints. But the reality is now my numbers are increasing exponentially and I have to deal with it. With my new numbers, I still think it will be January 2021 when I restart Velcade. Since I get my labs every 8 weeks that puts me at the beginning of December, with a doctor visit by the end of the month and then a start date. Velcade means weekly trips to the infusion center. It’s 3 weeks on 1 week off.

It’s depressing but the fact remains I have a cancer that goes in to remission and then re-emerges. It’s never going to disappear. Don’t get me wrong, I am exceedingly fortunate not to be dead from this already, so it’s really just a matter of buck up and deal with it. So many cyber friends with myeloma are long gone with very aggressive myeloma. Mine is always there but so far hasn’t been aggressive.

So here’s the numbers:

Kappa light chains at 382.mg/L up from 239.2mg/L

Lambda light chains at 11.2mg/L up from 10.2mg/L

ratio of the two at 34.11 mg/L up from 23.2

M-protein( SPEP) .4 up from .3

Well, blood doesn’t lie so there it is in black and white. The cancer cells are on the march.

Give me a few days and I’ll be okay with it and be ready to reset. Plus, after thinking about it, I wouldn’t want to start anything till after the holidays so there’s that as well. I’ll see what he thinks when I see him at the end of the month.

Fall Cooking and tidying

I made a lovely pumpkin cake with cream cheese icing the other day. It was just right for this time of year.

Actually, I couldn’t find pumpkin anywhere even Walmart. So I happened to check Raley’s/Bel AIr and they had their brand on sale for $1.25 a can. I bought 10. Then I forgot the cream cheese so B went to Bel Air and bought 2. Never again. He paid almost $5.00 a package. I can get 6 boxes at Costco for less than $7.00. Well, I guess it pays to have a stockpile of things like that.

I went for my labs Tuesday so I’m guessing I’ll hear the bad news by next week. He also ordered an IGG test which is immunoglobulins. I guess with Myeloma it must show differently but I can’t really say I recognize it. So we’ll see.

Today, I’m making a creamy chicken and wild rice soup for dinner. I have some frozen Borscht for the veg.

We actually have a cool cloudy day and it’s great. I washed all the outside windows with the Windex sprayer that attaches to a hose. Very convenient. I try and do the outside windows 4 times a year generally around the cross quarters. Since I do the inside windows with each zone that gets done in each room about every 5 weeks. I like clean windows.

In the bedroom I added a linen top cover. I love the look and feel of linen. I don’t think now that I have had linen sheets I could go back to regular cotton ones. So I was watching one of my favorite Youtubers, Benita Larsson in Copenhagen and she said in Europe most people only use a duvet cover over the bottom sheet. Then take that off to wash as needed. That wouldn’t work for us but I got to thinking about wanting a linen top cover. I checked everywhere for just fabric but it was all running about $45 a yard. So I happened to think of Ikea’s linen set. I checked and they had the king size duvet. Works perfectly and gives me the look I’m after. Oh, and it was only $79.99.

Linen king duvet used just as a covering for winter. I love how linen looks after it’s washed.

I also use linen napkins for meals and have a white set and a natural set. Sometimes I iron them but mostly I like their crinkleness.

I think I’ll go do some garden stuff also since it’s cloudy and I can get maybe one bed ready for fall planting.

I’m also going to get out my vintage Halloween stuff to put out.

The week ahead…

We both felt really awful yesterday. It seemed like an allergy type thing as we know it’s not Covid. ( no fever, no cough,) But still kinda headachey, and low energy. Sometimes I’ve had days like this out of the blue, but not on the same day as B. He just took it easy all day. I pushed thru and did most of the kitchen zone. I thought maybe it was a reaction to the air quality since we had been out walking but I’m not sure. When were out we always have masks on and we use sanitizer. Plus, everywhere we went people were 99% masked. So kinda a question mark.

We both feel better this morning but I still feel slightly off. I had plans to get my labs this morning but rescheduled for tomorrow. If this is allergy thing, my counts will show lower so I thought better to wait a day. I don’t see my doctor till the very end of the month so I have time to get my labs and results before hand. I don’t like the surprise of waiting. It reminds me of when I was first diagnosed and all the tests and waiting and then the dreaded phone calls. Now I’d rather know before hand and adjust my headspace.

I did make a lovely smoky lentil soup( William Sonoma recipe)( you can get from their website.) for dinner but that’s it. Usually I’ll make grilled cheese or have some homemade bread but that didn’t happen. I put together my monthly meal plan. I write it out but I don’t follow the days exactly. So we had the lentil soup Sunday not the frittata. I just use the template as a guide. Then I check off what we have eaten.

You can see I still have a few squares to fill in. I plan on looking at some cookbooks today. I also try to do one or two new recipes a month.

We are in cooler temperatures today and the air looks good. I keep thinking that maybe walking in the park with the air quality unhealthy affected us. On the other hand we’ve been doing it now since the fires started and haven’t been affected so who knows. It’s a mystery.

I was laughing maniacally( joke) when I read Trump was on Dexamethasone. How funny!! As anyone who has been on Dex,off and on for years, you know it masks aches and pains and other ills because it is such a high dose steroid. The problem is what goes up must come down and when he’s off it, then the problems could resurface especially his coughing. Oh well, he deserves it and more. Honestly, driving around in his armoured car infecting others or at least the possibility, is pure evil. Just for a photo op.

The week has B’s video appt with the nurse practitioner and labs. If the air stays nice we might do that drive up to Tahoe to see the lake. Maybe pack a picnic.

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.

 

Projects done!

The closet looks bright and clean. We did move our space heaters to the barn and I have one box of “I don’t know what to do with” stuff. One item is my old Waring blender that I bought new in 1985. It still works fine but most I use my Vitamix. So I’m undecided and will wait on deciding to give away or not.  We still need to hang my mirror back up and then I can take a photo if I remember.

B finished repotting the bamboo in the new barrels. This is actually a pretty big job as the roots needed to be cut with a Sawzall.  That’s how thick they were.  We are going to get a 3rd barrel as it will fill the space out nicely.

We also took everything out of the chest freezer and defrosted it. I got a good count on what’s in there so that was helpful plus it’s more organized.

The weather is quite a bit cooler and we actually sat outside last night.  Today is also really nice with a high of only 85.

Yesterday I bagged up the Central Milling flour into 3 mylar bags. I could have used the food saver bags but  I wanted to test out how the flour would be. The other bag I will use the food saver bags and then compare the two.

Tuesday we did our Costco shop. It was just under $500. Some of that was alcohol. The Costco beer which is a variety of ales and other types is a great deal at $20. and this was the first time we’ve seen it in almost a year. So we bought 2. That should last a while. I don’t drink beer but B does( although not too much right now with his issues) and my son has the occasional beer. Then we bought champagne for our anniversary. Since we’re not going anywhere, we figured we’ll do some kind of celebration dinner with champagne. This shop wasn’t really a prepper shop but more stuff for the month, salad stuff, avocados, spinach, cheese, bread.  The only things I still need are milk, bananas, vegetable shortening, and burger rolls. I’ll probably do that later in the week.  I’m hoping this shopping will get us thru most of the month.  Oh, I did get organic pasta that was on sale. So that’s for the prepper pantry.  Later this month we’ll hit Winco and get 2 more of the buckets if they have them and the gamma lids. I’m tempted to go sooner than later as I’m guessing they will get sold out.

I’m still waiting on my labs, so maybe by tomorrow.

Tomorrow is my son’s 26th birthday. Such a wonderful young man. Funny, talented, smart, and has a full-time job with California State Sierra Nevada Conservancy.  He was a fun kid and outgoing.  He was homeschooled all the way thru high school. He then went to Community college, got 2 degrees, and then graduated from CSU Sacramento. No student debt and he did most of it on his own. We are so proud of him. So, I need to find out what kind of dinner he wants and dessert. Our family ritual is the birthday boy/girl gets to pick their favorite dinner and dessert.

I’m reading the new Todd Borg” Tahoe Hit”. It just came out if you’re interested. He’s one of my favorite authors and is local to Lake Tahoe.

685789B5-5871-4B18-ADA0-0533A910EDF3.jpegHere’s my new BLACK LIVES MATTER yard sign for the driveway.

 

 

The week ahead…

First looking back over the last few days.

Still really hot here making it hard to go outside and do much except for early in the morning.

We picked up some oak barrels at Home Depot to replant some bamboo in. I love putting bamboo in barrels as it looks lovely.

Years ago, probably 20, I went to a Waldorf parents house who had golden bamboo. I dug up as much as I could( believe me, back-breaking). But that is what we have as a privacy screen all around the driveway area. But we put some in barrels as it contains it and makes a pretty visual effect. We have these two barrels outside our bedroom window. But the old barrels had deteriorated and were no longer holding water so they will be replaced. I’m guessing these were about the same age, 20 years.

Then Barclay’s labs came back with very high creatine( not good) because of the new drug Jakofi. We both kinda flipped out since the NP kept saying hydrate which he was doing obsessively. He will need to go in for an IV hydration if his numbers remain high. I’m really bugged by this as it all started with the Jakofi. It’s a great drug for GVHD but he’s still on other stuff and it’s hard on the kidneys. So I asked why not drop the Jakofi to 2 a day then 1 a day and so forth. No answer on that yet. So we were definitely bummed out for a few days. We’ll see how the labs are this week.

I had worked on learning how to butcher a whole chicken. I saw a youtube by ProCooks, who I like, and thought well, I could do that. It’s fairly simple just kinda involved so not sure I think it’s worth doing regularly.  Then I made Pioneer woman fried chicken and it was A LOT of Work. Not doing that again. Plus the kitchen ended up looking like a vat of oil exploded. It was tasty but I wouldn’t say great. I think I’ll stick to Southern-fried tofu.

Today is my Flylady morning in the LR zone. Definitely an EZ zone for me with just some deeper dusting and window cleaning.  Generally, it takes 10 minutes tops.

I’m going to get out the bread maker and make some WholeWheat sourdough. I just use the bread maker to make and rise the dough and then I bake in the oven.

Other than that an open week.

I’m making lists of my barn prepper pantry items so I can determine how many weeks/months of stuff we have.  I want to have a balance of pantry security and not going overboard with the ‘survivalist’ mode. I did order some dried Whole milk to put aside in case of either a power outage or unavailable at stores. If anything, I can use it in baking.

I found a book at our little free library, “Radio Free Vermont

. Pretty funny book and is contemporary as Trump is president. If your library has it, I’d recommend it for a fun read.

Here’s an interesting bit of news from our area. We used to live in Foresthill. From 1975 when we came to California till 1995 when we moved here( about 20 miles difference) with Auburn being in the middle and everyone’s main hub. ( mostly). So we lived near a road called Yankee Jims. Very remote and goes down a very windy, steep and treacherous dirt road( some of the way) to the North Fork of the American River. There’s a bridge there that, if I remember correctly, was one lane. Anyway, there’s parking on the side of the road for maybe 10-15 cars MAX!  Last weekend there were 313 cars down there, blocking the road both ways. So now the whole area is shut down and no cars can go in. WHY PEople!! So STupid!

Oh and another STUPID controversial thing. I was looking on Youtube for prepper pantry ideas so I clicked on this one called Alaska Granny. I thought it looked interesting. Younger than me, so not sure where the “granny “comes from. Anywho, this was right after the debacle with GOYA foods. BOYCOTT GOYA!! BUT, this lady does a whole vlog on GO OUT AND BUY AS MUCH GOYA FOODS AS YOU CAN TO SHOW SUPPORT FOR TRUMP AND THE OWNER OF GOYA.

Really??? oh well, takes all kinds. I guess she thinks Trump is cool or some deluded thing. Really, he’s sending federal troops into cities for political shit.  Really, people, he’s a narcissistic nutcase.  History will show this to be one of the worst periods of American politics.

OK, I’ll get off my soapbox now.

 

 

the week ahead…

Another quiet week with no appts. I don’t get my labs till the first week of August. I’m expecting the worst with another steep rise but am still hoping to delay treatment till fall or even this winter. Not to be pessimistic but realistic since Myeloma just doesn’t go away and blood work doesn’t magically get better:(

Monday is chore day and doing little things around the house. I cleaned the tub with Comet and I plan on washing the towels which I try to do on Mondays. The Flylady zone is the bedroom. I’d say if you’re new to Flylady, clean everything out of your bedroom except your bed and maybe a dresser. No TV’s, no extra chairs( unless it’s a very large room), and basically remove all distractions.  If you haven’t uncluttered, now is the time to do so. As I’ve said many times, once things are simplified and cleared out cleaning is a snap, and keeping it that way is quite easy. More stuff means more cleaning and it is visually distracting. I do have a Heywood Wakefield bedside table I need for my meds that I take in the evening and my water.  If I could figure out a way to eliminate that I would.  Maybe another wood crate attached to the wall like the one on B’s side of the bed. It’s small but has enough room.

Mondays are also the day we don’t walk but oddly it feels like the day just doesn’t feel quite complete. But since I’m quite OC about it, it’s probably good I break up the routine.

I’ve been researching long term prepper pantry storage and it seems Mylar bags are the way to go. But since I’m using the vacuum sealer right now, I don’t think I’ll add mylar to the mix. Maybe down the road.  But I’m not looking to try and prep for 5 years and those people that do are kinda extreme. So what I am going to do is get a few more 5-gallon buckets and put some of the vacuumed sealed bags in them so light doesn’t affect them. I’ll try and do a bucket for rice, then one for beans, and then one for flour or baking things. Also, I’d get the gamma lids since they screw down.

I do think that in the fall things are going to get worse and so it is good to be ahead of that. I still like the idea of the upright freezer for certain things but we need to kinda regroup from the tree expense.

Meal plan for the week is : ( in no particular order of using)

  • Tacos, bean and some taco beef for the carnivores plus all the trimmings
  • Cobb salad with hardboiled eggs, sliced cheese, olives, maybe some kind of bean like kidney beans, veggie bacon, cherry tomatoes from the garden and we also have cucumbers coming in as well.
  • homemade macaroni and cheese with broccoli on the side
  •  chicken piccata/tofu with corn I froze( from the fruit stand) and maybe potatoes.
  • homemade pizza
  • mystery meal???

Well, that’s a wrap for now.

 

 

 

 

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

What the fuck is wrong in America?

The awful murder of an innocent black man by 4 policemen.

The absolutely horrendous situation of the privileged white woman calling the police when a black man asked her to leash her dog( which was posted on a sign right behind her). Thankfully, this did not end violently and I’m glad she was fired from her job.

I’m glad there are protests going on. Something has to change in this country.  Of course, with a pandemic also going on, it’s tricky. I’m just depressed by it all. We have a racist president who is invoking violence, plays to his base, is a narcissist, and cannot feel anything except his own shit.

Something has to change.

In other news on the home front, we had another Instacart Costco order that was expensive but worth it. I spent @$375 for food and then a tip. Lots of stuff was prepper pantry stuff like bleach, cleanser, and toilet paper.  Some good food stuff like tuna, potatoes, avocados, bananas, and more. I looked at the receipt and then what I was charged by Instacart and most things were about $2.00 more that way. I ordered Sierra Pale ale for B and that was $4.00 more. So it definitely adds up but to not have to go into the store is worth it still.  The young man said the store was very busy and the checkout lines long. So I think a good choice. I’ll reevaluate in June about the time I need coffee. Of course, it’s a privilege that we can do this right now. There have been times in our past when I had $10. 00 a week for food.  And there have been times when I had zero money for food. So, for now, we can do this. Down the road, who knows. We’re living on a very limited income which will come in under $30,000 so… we shall see.

Our weather has been crazy with over 100 degrees one day and then hail and thunder the next. today is partly cloudy and cool. At least we’re not running the coolers all day.

I had my eye exam and everything seems stable with my macular pucker. Can’t do much about right now.  I also decided to cancel my crown on Tuesday and wait a few more weeks. I’m nervous about the air filtration in the office and stuff drifting around. I’m not sure much will be different in 3 weeks but I’ll try.

Next week I have my labs so we’ll see what news I get there.

 Barclay has another Bone Marrow Biopsy on Wednesday( such fun) so hopefully, he’s still fully engrafted. He started the Jakafi and I really hope this fixes the GVHD stuff.

Well, that’s all the news here at home. We did finish Ozark and it ends pretty violent and setting up for a 4th season. It’s good drama and Laura Linney is one of my favorite actors.

Flylady zone is the entryway this week if you’re following.

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.