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.

Sorry, We’re Closed

Mother’s Marketplace

I live in Hood River, Oregon. The river for which it is named flows north from the foothills of the Mt. Hood National Forest. Its three forks converge ten miles south of town. My youngest son and his family shelter in place near that spot. From there it meanders through woods, pastures, and orchards before emptying into the Columbia River at the waterfront where I often walk.

My wife and I moved here more than forty years ago. Good fortune came from that choice. We raised our sons in the upper valley. Our first home sat on a plateau between the middle and west forks of the river. The roots of the grandkids sprout from the same soil that nurtured their parents. They share the same legacy of mountain forests and streams; wildlife and rural community.

Ace Hardware

The county of Hood River depends upon agriculture and tourism for its existence. The orchards and vineyards thrive in spite of the virus. Tourism, however, stopped abruptly when Oregon’s governor imposed restrictions to prevent the pandemic’s spread.

The itch to be normal again is strong. But, uncertainty circulates through our community. One day there’s confidence the coronavirus will dissipate in the ether of time. The next you are reminded that this disease persists with an ubiquity reminiscent of dandelions. It’s everywhere. 

Camp 1805

Locals, unemployed by the shutdown of small businesses, return to work with caution. Some retail outlets prefer to continue offering their products from behind closed doors. Some restaurants feel takeout only is still appropriate. Other stores allow customers to browse their wares. A few serve food with revised seating to maintain a semblance of social distancing.

Our health department reports 16 cases of COVID-19. Some have completely recovered, none required hospitalization, and no one in Hood River has died from the virus. Sheltering in place and the discouragement of visitors worked to keep the level of infection low. Now, as we open ourselves up to outsiders, the risk of disease looms.

What have we learned from the pandemic of 2020?

We know that 370,000 people world wide have died from the disease.

We know that the United States owns over 100,000 of those deaths.

Lampoei’s Thai Food Has Always Been Takeout Only. Suddenly, It’s A Great Business Model.

A disproportionate number of the deaths are borne by the elderly.

We know the delayed response from our national leadership was a mistake.

Rosy pronouncements from the White House conflicted with reality again and again.

We know its disorganized rollout of plans and promises seldom materialized into action.

We know, incredibly, the president has fostered division instead of unity.

The result is confusion and the world’s worst rates of contagion and death.

The result is a collapsed economy that still wobbles.

We know 40 million people are unemployed in the United States.

Forty. Million. People.

We Miss Hanging Out With The Grandkids.

We know simplicity, once enacted, made a difference.

Social distancing, masks, and good hygiene flattened the curve.

We know essential workers in a community are ordinary people, doing ordinary jobs.

We know, if we choose to adjust priorities, hope exists to renew our troubled planet.

*****

The wonders of our rivers and forests and wildlife carry on, unaffected by the crisis of disease. The human community, however, restricted activities to protect themselves from contagion. Now, with the relaxation of those controls, what consequences will the latest new normals deliver?

Answers elude us about things such as whether public schools can open next fall. Then, there’s the renewed permission to be going out and mingling with one another. It’s like a blind date with mortality. You hope to be lucky.

I wait. Time goes by. There will never be no risk. But continuing with safe behaviors will increase your luck. 

Anything new?

No, not really. It’s just same ole same old.

On Monday we went down to Winco, which is @ a 25-minute drive. We went early like at 6:15 am. It was fairly empty and we got everything I was after for the prepper pantry. Extra pasta, salsas, instant potatoes, and lots of other stuff to put out in the barn where the prepper pantry lives. We have stainless steel restaurant shelves out there and I’m using bins to put things in. The bins are to keep things clean and to keep bugs or other things out. We haven’t had any problems out there in a while but better to err on the side of caution. Some things I don’t keep in bins like the canned goods. Plus we will need to be rotating stuff into the house so some stuff I want to be able to see. I have labeled most everything. There’s a little more to do but mostly it’s done.

In the house, I have my closet pantry and then in the kitchen, I have some wine crates dedicated to canned goods as well. Overall, I’m happy with what I’ve done. I think if I planned meals, I have at least 3 months worth at this point.

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I’m still spending ALOT on food but as it is prepper pantry stuff, I feel okay about it. I have a very bad feeling about what the second wave of Covid-19 will bring. People are going a little crazy going out and so many are not wearing masks. Go figure.

Tomorrow I will go to my eye doctor’s appt. I’m planning on wearing a mask. This is my annual eye exam and my macular pucker scan. I probably should do the surgery but honestly, I don’t want to deal with it. I can’t really see out of my right eye but my left compensates so I guess for the time being ( unless it’s worse) I live with it.

It’s really hot here for the next few days so the coolers are in the windows. By Saturday though the temperatures are expected to drop again. last year at this time I was driving to Sacramento every day and it was also a heatwave. By the time I was in the RV it was sweltering.  So I guess its par for the course.

I made a chocolate cake last week.

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It was very chocolatey… I ended up freezing half as we weren’t eating it all.

Our daughter’s birthday is Friday. Wow, 35 years ago!!! We were so happy!! And had waited a long time for her. We’d been married 15 years so, a pretty long time to wait for a kiddo!!

 

Friday Stuff

I’m 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.

 

 

#Myeloma Patients Health – It’s A Question of Balance

PictureThe COVID19 DREAM TEAM

Like everyone who is in the high risk populations for death from the CORONA virus, myeloma patients have heightened resistance to going to the hospital for fear of getting exposed to the virus.  Unfortunately, this is heightened by the findings, 40% of all infections are caused by asymptomatic carriers, and the average death rate for COVID19 positive Americans is 5.9% but over 30% for myeloma patients. 

I have tried to practice what I preach and follow the guidelines which #birx and #fauci have recommended. Until recently you could not get a virus test unless you were symptomatic and had a doctors order, and it was not covered by Medicare.  This has now been changed and is covered by Medicare, and I have since gotten both the virus test, and the antibody test(courtesy of myeloma crowd).   I do not have the virus or the antibodies to the virus, so I still remain vigilant.  It would be nice if I had the virus and recovered but with a death rate of 30%, the best approach is to stay virus free until a vaccine or cure is found and available to all.

I have been putting off surgery for a hip replacement for years, but it is now bone on bone and just too painful.  It was originally scheduled for April 22nd but was canceled by Mayo because of the pandemic.  Talking with my doctors they believe now is the time for treatment because we are over the curve and going down, but with the opening of the country we will likely see another wave this fall and winter.

I have had insurance issues trying to get pain medications. Tylenol is no help, and I can not take NSAID’s because  I have myeloma caused kidney damage. I could take a topical NSAID cream which does work and is easy on the kidneys, but BCBS of Florida has turned it down 3 times.  Their response is I have to take oral NSAID’s first, but I have told them oral NSAID’s would damage my kidneys and put me back on dialysis.  So we all have this Question Of Balance.  We all have to weigh the risks vs. the benefits of our health care decisions. Is the risk of getting COVID19 significant enough to cancel the surgery? 

I chose to be pain free. I will be going to Mayo in Jacksonville, and the Mayo system has a number of safety measures and procedures in place.  So I come to the conclusion, I have minimized the risks, will use a N95 mask at all times, keep my distance if possible, and sanitize hands and things I touch frequently.  I asked a number of questions and found out the OR staff have all been tested for the virus, all patients are tested before surgery, all nursing staff are masked and surveyed for fever or symptoms, as are food service personnel, and there are two separated areas, COVID and non COVID, where staff never crosses over.

I think I am making the correct choice, but we all must answer our own “Question of Balance”!

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


A Question Of Balance by the Moody Blues
WHY? Just because I like it!

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