Cancer Anniversary

I’m pretty sure everyone who has been diagnosed with cancer remembers the day if not the hour they heard the news that they had cancer.

Mine was June 15, 2005.

That spring I had gone to a sports doctor to find out about getting Kyphoplasty for my back which still was bothering me. He ordered an MRI and the rest was history. Although it took almost 3 months to get to that place since I needed to have a bone biopsy where the plasmacytoma was which was T -10.

It took quite a while to get the appointment since it was a neurosurgeon that had to do it. And it was truly horrible. He couldn’t get the needle in so he had to use some sort of hammer to pound it in. Not pleasant although it didn’t hurt it was just very weird. I was not under general anesthesia just sedated.  Then after that, it still took 10 days to get the results.

I was standing in the driveway when the phone call came in. I mean at that point I knew I had cancer just not exactly what. After that, I was referred to Sutter Oncology in Sacramento. Within 2 weeks ( actually 4th of July week, I started 17 rounds of radiation.  Then after that chemo for 6 months. Then in the spring of 2006, I had my SCT.

So it’s always kinda bittersweet.  I’m grateful to modern medicine for giving me a second chance. I’ve lived to see my son and daughter graduate college.

Now I’m facing another relapse. It’s okay, I’m still here and will continue to survive until it’s time.

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.

 

the week ahead…

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This is Rose Campion that has spread all over our hill.

We have a few things lined up for this week.

Tomorrow we are having our septic being pumped.  I know very exciting. But really, our septic tank is under the 1200 required by law but is grandfathered in because it was put in a long time ago. Actually, we’re not sure when it was put in since the old man who lived here didn’t get a permit at least that we could find in county records. So about 5 years ago when the septic was overly full and we didn’t know it until the toilet wasn’t flushing down and we knew was wrong. So now we’re on a 2-year schedule. Once he opens and pumps we’ll know if we could’ve gone 3 years. I know, I know, so exciting and TMI.

Then I’m going to brave Costco since I want to use our rebate. I’m not too worried as Costco requires everyone to wear a mask so I’m good with that. I have a big list of things to get( again) but some are still prepper pantry stuff. For instance, I’d like to get a case of chili and some more marinara sauce. Plus I need washcloths and the 24 pack of white hotel washcloths are really the best for the money.

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here’s my nifty food vacuum sealer which I LOVE!!!

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So cool.

 

Later in the week, we are going to drive up to Tahoe to go to the cannabis store so B can get some stuff. His plants are coming along but it’s a way off to harvest. Plus the ride will be nice. I’m thinking of bringing some coffee in our mugs and maybe sandwiches. The beach area in Kings Beach is quite lovely but I’m not sure if there will be lots of people or if it’s still closed.  So a nice day trip.

The weather is quite nice this week. No really hot days.

We are also going to call the tree guy because the giant tree is now leaning MORE!! At first, I thought I was just imagining it but the top is no longer straight up. This is a huge tree and is aiming straight at the barn.  We have the money in our emergency fund but now there is no extra money coming in so whatever we take out won’t get replenished. Once it’s gone, it’s gone. But I think, except for the giant oak near the barn, this would be the last tree for a while unless something else happens. We have 2 other huge Ponderosas that are leaning but they are leaning away from our house. Unfortunately one is leaning towards our neighbor’s house which is kinda scary.

This week is the kitchen zone if you follow Flylady and mine is done already. I just need to mop the floor later.

We are also planning a trip to Home Depot for wood. I’m conflicted about buying from Home Depot since the owner is a huge TRump supporter but the closest Lowes( liberal) is down by Costco. So for our old van a bit risky. ( The van is the only car that can hold wood on the roof and inside when we take the  seats out). So, anyway, it’s a conflict for me.  We are planning to get some fence posts so we can start the fence behind the barn to block out those neighbors.

That’s about it.

I’m so glad the protests are making such a difference and maybe we will see some real change. It is still so sad it has taken so many black lives though to get to this point.

 

 

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.

Taking down General Lee’s statue!

Finally, some good news.

Virginia’s governor, Northam, is removing the huge statue of Confederate Gen. Robert E Lee from a prominent place in Richmond and placing it in storage.

Hooray!!!

This statue put there in 1890, symbolizes the confederates stance on slavery.  That Lee was fighting to keep black people as SLAVES.

We must be better today and put these symbolic statues in a museum or a park dedicated to the tragic history of slavery in this country and showing how the Civil war divided this country.

Not unlike what is happening today with Trump dividing this country with his white supremists support.  It has to stop somewhere.

Black lives Matter.

All lives matter.

 

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!