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.

 

Costco and Dr. Stangelove

Yay….., our Costco toilet paper order showed up yesterday. That means we’re set and won’t need to go into the store at least for a while yet. I have another home delivery of some prepper pantry stuff showing up. That includes brown sugar, regular sugar, and bakers yeast and chocolate.  I was talking with B that the last time we were in Costco was March 3. so if we can get to June 3 that’s 3months.  The home delivery, even though more expensive, has been a lifesaver. Time, gas, driving down to Roseville. So really a win-win.  I think I’m still going to do one more Instacart, but I’ll wait on that for now.

We used more of the LLS gift card at our little market yesterday and bought things to get thru the week, like hot dog rolls, burger buns, tofu, milk, and cream.

I also am expecting a farm to table meat delivery of some chicken and a small amount of beef. It’s called Crowd Cow if anyone is interested. They are 2 guys from Seattle who wanted to support small farmers.  I’ll do an update on how it is after it arrives. I kept the order small to check it out.

For anyone who drinks wine out there( we do) Darci Kent wineries have case sales going on. We have bought from them before and their wine and labels are quite lovely. I’m planning on buying the new case release( if it’s still available) of a rose, sauvignon blanc, and chardonnay.   Maybe I better go check right now.  Whew…. all good. I ordered it. Yeah, I love NOT having to go to the store to buy wine.

B has the gate ready to go up today so that will be one project down and lots more to go.

We watched Stanley Kubrick’s Dr. Strangelove last night and wow, for a movie back in 1964?? it was great and so well done. Usually, I don’t really like Kubrick’s stuff but this was good and Peter Sellers was pretty phenomenal.

a change in the weather

It actually rained here the other night. We woke up to everything watered down. All the yellow pollen washed away. It’s cooler but actually nice. Today our high will be around 60 so okay.

Update on the Instacart order. It was great. I got almost everything I ordered and was really pleased. It is more expensive with a tip but I definitely thought it was worth it. I will probably do at least one more before venturing to Costco.

We did a very early trip into Home Depot since they wouldn’t do the curbside pickup for the gate post. We bought one farm gate for one driveway but needed the post. I don’t plan on keeping the gate close all the time but I want the option especially when we’re not here. Our driveway is weird as it splits and goes straight into where we park and then to the right back to the barn. No one can ever figure out which way to go.  I think we will do the second gate in the fall.

We’re also planning to put up some privacy fencing. The neighbors behind the barn moved up here from the Sacramento area and have a lot of crap we can see. So we plan on putting up around a hundred feet of cedar fencing along that border.  Then we want to do the same for where our elderly neighbor( Leo) lives since when they sell I fear who will move in will be rednecks with 6 kids. So I want a fence along the driveway to block seeing over there.

I’m also thinking of doing a bulk meat order from someplace like Butcher Box. It’s supposed to be small ranchers and grass-fed meat. Has anyone done that?  Usually, I get organic from Costco but thought about doing something different.

I bought a food sealer thing on Amazon that vacuum seals food. I tried a few things yesterday and it looks like it would be great for rice, meat, cheese, etc.  I tried bread and it squished it flat so that didn’t work. I then read the manual and it said to freeze the bread first and then vacuum seal and put back in the freezer. So I’m going to try that today too.

 The chickies have quadrupled in size and are now out in the big girl’s pen. They are still separated but soon will mix with them.  We’re going to have lots of eggs by next spring:)

We’ve been watching Ozark on Netflix and it’s a good show. Dark, but good. Sorta like Breaking Bad was. Oh, plus on Hulu the funniest, Stan versus Evil is hilarious. Definitely lots of laughs.

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another loaf of sourdough…

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this is what it looks like in the proofing basket.

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some chocolate chip oatmeal cookies.

Frugal Friday

We didn’t walk this morning. I just didn’t feel like getting up and going right out.  Kinda weird. and definitely not me. Oh well, it’s good to mix it up some.

I had applied for the Covid-19 LLS grant of $250. I received the Visa card and used that for groceries so that was a huge saving.

I am getting my first Instacart order today. I’m supposed to keep my phone with me so I guess I’ll turn on the ringer so I can hear if the shopper calls me. I’ll update once I get the order and let you know how it is or was. It definitely was NOT frugal and there is a tip which I hope was enough. I’m guessing they get paid to shop and gas so the tip is on top?? Anybody have an idea about the tip? I did 10%which was hefty.

Our county( Placer) is opening up certain things soon. I’m against opening anything too soon and won’t be going out to stores. I canceled my gym membership as I can’t see myself going back before next year or whenever there is a vaccine.  I’m not a shopper so except for Target, Home Depot, and the store I don’t really go into stores. So I’ll keep doing curbside pickup.

I made a yummy pasta salad for dinner last night with grilled chicken, bowtie pasta, artichoke hearts, olives, and a salad mixed in. It was good. I always leave the chicken on the side so B doesn’t get it in his. Tonight is supposed to be pizza night but I’m going to use stuff from the freezer. I have one frozen pizza and maybe do some bruschetta with tomato on the side. I’m trying a different No-Knead bread recipe today. It’s the NYT one. So far I’ve done the King Arthur one and the original Jim Leahey’s. They’re all basically the same but a little variation.

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The Cecil Brunners are amazing this year. They always come out for Mother’s Day.

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Another view.

 

Enough Bad News, Some Great News For #Myeloma Patients!  The Myeloma Miracle Continues!

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With the challenges of COVID19, it becomes hard to remember the wonderful improvements seen in myeloma over the years, and the critical part the leadership of myeloma scientists, specialists, advocates, drug companies provide and the remarkable work of the FDA and its Orphan Drug Designation, without which orphan drug progress would have languished, as it had for decades.
In September of last year I wrote the blog post(CLICK HERE) outlining how all myeloma drugs in the last 16 years had two FDA designations for each approved drug. One being an  Orphan Drug Designation,  and the other being Fast Track, Priority Review, Breakthrough, etc.  Remember there are more than 6000 orphan diseases and majority of these diseases have not one approved orphan drug.  Myeloma patients should feel blessed to know they have had 10 new drugs approved in the last 16 years.  In addition, Myeloma (an orphan disease) has  7 drugs which  all had two FDA designations, but have yet to be approved.  These drugs include the following:

Drug                             Company                 Designations      Description

AMG420                        Amgen                        OD&FT          (BCMA) Bispecific T-Cell Engager
                                                                                                (BiTE®) Antibody Construct
CLR131                         Cellectar                      OD&FT           Radiotherapeutic phospholipid drug

                                                                                                 conjugate (PDC™)
GSK2857916               GlaxoSmithKline           OD&BT          (BCMA) antibody-drug   
                                                                                                 conjugate (ADC)   
bb2121                          Celgene                       OD&BT          BCMA chimeric antigen receptor
                                                                                                 CAR T

Galinpepimut-S              Sellas                          OD&FT          Immunotherapy vaccine to elicit a
                                                                                                 strong response against WT1
P-BCMA-101                 Poseida                     OD,FT&BT      Autologous chimeric antigen receptor
                                                                                                 (CAR) T-cell therapy
Melflufen                        Oncopeptides              OD&AA         Drug activated by aminopeptidases,

                                                                                      overexpressed in myeloma
So how have we fared with this list?

AMG420 – has dropped from the list in favor of a kinder gentler similar drug called AMG701, however AMG701 has only one FDA designation.

All of the other drugs on the list are progressing very well, with GSK2857916 and bb2121 expected to be approved in the next several months. 

For the first time in 16 years,  two new drugs have been approved without dual FDA designations. However, one  is another  CD38 antibody similar to Daratumumab called Sarclisa® (isatuximab-irfc) by Sanofi for patients with relapsed refractory multiple myeloma.  Another approval is subcutaneous Daratumumab called Darzalex Faspro.

In addition we must add two more to  the list of candidates with two  or more FDA disignations. 

Drug                             Company                 Designations      Description

JNJ-4528                         Janssen                    OD&BT              CAR-T with two BCMS-targeting
                                                                                                     Single domain antibodies

CT053                             CARsgen               OD, RMAT*          A fully human anti-BCMA CAR–T                                                                                                         Therapy
* The RMAT designation is given to regenerative therapies intended to treat, modify, reverse, or cure a serious condition.  

Other drugs which already have an orphan drug designation and have the potential to obtain another FDA designation include: Amgen’s AMG701(replaces AMG420), Molecular Partners MP0250, DARA BioSciences KRN5500, and SUTRO’s STRO-001. 
Historically each approval of a new class of drugs (eg. Imids and Proteasome Inhibitors) have added a year or more to myeloma  life expectancy, so approval of these drugs could double the current myeloma life expectancy.  Now that is GREAT NEWS!

Good Luck and May God Bless OUR myeloma journey. For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1                                                                                     


BE SAFE! #COVID19 & #Myeloma, All We Have To FEAR is the LACK Of FEAR Itself!

Myeloma patients in general have a higher risk of infection, which is 7 times that of the average person.  It is because of this we take special care to be on top of any infection.  I have written about this in the past.  CLICK HERE for the link.  I always have Tamiflu and an antibiotic Z-Pack for whenever I get a fever.  I have had pneumonia three times and gone septic once.  This combo has saved me so very many times.  However, COVID19 has put a whole new level of FEAR into the equation.  Before the flu vaccine or antibiotics for secondary infections were developed, the Spanish Flu resulted in the death of an estimated 50 million people worldwide, and 675,000 deaths in the US.  With the development of the flu vaccine, antibiotics, and antivirals, the typical US flu season now has just 34,000 deaths in the 1918/19 flu season. The new level of fear for anyone over 65 is outlined in the following graph.
 
However, myeloma patients have many other complicating factors.  People with commodities like cancer, compromised immune systems, Diabetes, Kidney Insufficiency, Heart disease  etc., have an even higher likelihood of death at over 30% as seen in France and Spain.  A recent study of cancer patients with COVID19 in NYC has shown hematologic malignancies were associated with a higher rate of mortality of 37%.  During the shelter in place order, it is imperative to take extra care to be safe.  Shop by curbside pickup, wear a mask, social distance,  wash hands, hand sanitizer et. al.  These efforts to be extra careful by myeloma patients and the government limitations and their policing, I believe have been able to keep our infection rate lower.  Our fear of getting an infection with no known FDA approved treatment has been a motivator for a SAFETY FIRST mindset. So why should we Fear the Lack of Fear Itself?

It is because not everyone is on the same page and do not social distance, will not try to move aside on the sidewalk, do not wear a mask in grocery and drug stores, or are younger than 44 and feel bullet proof and feel no social responsibility to protect those at high risk.  I will set this up by posting a few headlines which highlighted a need for a new heightened vigilance by the myeloma patients. 

California Governor Newsom announced a “hard close” on all beaches and state parks in Orange County on Thursday, after news photos circulated showing people not following social distancing guidelines over the last weekend of April.

Governor Gretchen Whitmer of Michigan says heavily armed men and Confederate flags at state capitol ‘depicted some of the worst racism and awful parts of our history’

‘Devastatingly worrisome’: Dr. Deborah Birx decries scenes of protesters not practicing social distancing amid coronavirus

I see and experience this lack of compliance in everyday life even under restrictions, just think what it will be like when they open up the economy with relaxed restrictions.  My appeal to you is that YOU must look after yourself, because with COVID19 a good defense is the only defense.   Until a vaccine is developed or a cure is found, our best  way of surviving COVID19 is to make sure we do every thing we can to stay virus free. 

Continue to Shelter in Place or Self Quarantine to protect yourself!

If you do have to expose yourself to the public then please follow the recommendations outlined in the following Wall Street Journal article.
Safety Advice for Reopening: How to Reduce Your Risks as Coronavirus Lockdowns Ease.  As businesses reopen, we asked public-health experts for guidance on venturing out.  CLICK HERE to view.

Dr. Landgren of MSCC has outlined what one of the best cancer centers in the world does to PROTECT the patient and you can hear the broadcast if you CLICK HERE.  Some of the safeguards include all patients are tested for COVID19, and based on your results you go to a COVID area or COVID free area, all patients and care personnel wear masks, visits are limited, all oral protocols are considered, and many more recommendations.  In addition, Mayo Clinic has recommendations coauthored by Dr. Morie Gertz and you can view them if you CLICK HERE.  

Good Luck and May God Bless OUR myeloma journey. For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

simple Sunday

It’s much cooler today and some clouds rolling by.

We walked early and the only one there was dog walker. We name everyone who comes to the park. Oh, not to them, just between us. Some have been less than nice like clodhopper runner. but there’s Sprite who is a long-distance runner and seems very nice. We say hi as she goes by. There are now 5 sets of babies at the park. They are very protective so we stay out of their way.

I finished the kitchen zone.

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Here’s part of my kitchen pantry and some of my vintage Pyrex. I washed them all today which is something I don’t do every time.

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Here’s on the window sill. A vintage Ball jar. I love these and have quite a few. You used to be able to pick these up at Flea markets for about $1.00 , not anymore.

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This is looking back at what really is the front of the house but because of how are driveway is no one ever comes to this door. When I used to do Feng Shui it would drive me nuts. Now not so much.

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This is another shot and you can see the patio table where we eat most meals now that’s it nice out.  To the far right is the laundry room we added on. You have to come out to get to it. Not sure how that will be when we’re older but heck for now it’s fine.E26CC31D-0E8D-487B-858D-C240267711CD.jpeg

Here’s a comfrey plant. When I was doing herbs I would harvest this and make teas. Good for bones.

The rest of the day is open and I have brownies baking in the oven but other than that it’s open.

I may go look for an ebook since I feel like reading something mindless.

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!

Deserted Streets, Empty Spaces

The Ruddy Duck on Oak Street, with some good advice.

In the early spring in this year of the pandemic we live in a house on a street that divides the city from the county. The trees in the fruit orchards nearby are past peak blossom and west winds scatter their petals onto the pavement. Strangers walk by the house, in groups of two or three or alone. Some wear masks, some don’t. The roads are quiet as families shelter in place and many are out of work and few cars drive by.

Downtown, some retail businesses operate a version of what was once a normal schedule. They restrict access to limit exposure for customers and staff. Hotels are closed to deter tourists. Restaurants provide takeout meals only, which further discourages outsiders. Deserted streets and empty spaces prevail.

In my garden, I plant petunias and nasturtiums in the sunshine. Coleus plants go where indirect light filters through the overhanging branches of trees. Birds chatter and sing and bathe in a concrete trough, oblivious to the worries of us humans.

Portway at midday.

At the hospital, which I visit twice a month to treat my cancer, everyone must wear masks. Nurses, in the infusatorium, move among us like bees attending a hive. They set IVs, adjust the flow of chemo drips, and take vitals. 

The coronavirus has yet to deplete the hospital’s resources. Gloves, masks, face shields and paper gowns seem plentiful. These protective measures minimize the dangers. True safe distancing, however, is an illusion one accepts in order to continue treatment against the more visible foe of a malignancy.

As of the 26th of April, our town has just five confirmed cases of the disease. No one has died and none of the five are hospitalized. The air is clean to breathe, the colors of spring bright, yet concern about the future mars the improving weather.

Mike’s Ice Cream, normally a hub of activity.

In the last month, global deaths from the coronavirus occurred at a rate of 50,000 every eight days. The elderly carry the load of this mortality. Paeans to beloved grandparents pepper human interest stories in the media. Many die alone, in the twilight of their lives, absent the providence of human touch and the presence of loved ones.

Illness and death aren’t the only factors in the equation that defines our current hardship. Restrictions on movements and livelihoods can lead to isolation. For many, financial ruin is a reality. Everyone feels the weight of an uncertainty that goes on and on and on. Bailout checks signed by an empathy challenged president won’t soothe the anguish. Weeks become months, and a sticky cobweb of contagion adheres to our consciousness.

We all want something settled and predictable to counter the chaos caused by Covid-19. Patience is our ally. Hanging in there is good advice.

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 would 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.