Category Archives: MDS

Thoughts 2022

Posted in California, camping, cooking, MDS, Uncategorized by

2022 started out awful with my sister suddenly dying of Interstitial Lung disease. It was so unexpected as she had been doing just fine and had never had a flare-up before. Her family was/is devastated. I still miss her even though we weren’t exactly ‘close’ we still had a good relationship and she was very kind and generous when Barclay was diagnosed with MDS. I miss her.

We were able to do many RV trips with Rubi and I’m grateful we bought this RV when we did and it fits us to a T. We really love that it is small but has everything we need( a bathroom). Our year started at New Brighton, then we went to Wrights Beach, Napa, and Tahoe and back to New Brighton. All our trips were great with no problems.

We had one tree taken out with a crane and it was expensive but worth it as we really couldn’t comfortably get Rubi out without being inches from the tree( or getting stuck, like the one time we were taking Rubi out and B couldn’t make the turn and had to inch by inch back it up. That was NOT fun.). A very worthwhile investment. Having the tree out makes going out with the trailer easy.

We’ve all been healthy this year and that’s the most important thing.

This year I learned to pressure can and was gifted a pressure canner thru out local ‘Pay it Forward’ group. It’s been fun and rewarding to can shelf-stable soups, beans, sauces, and more. I hope to buy an All-American this spring for more pressure-canning adventures.

I went to our local farm almost weekly and loved getting farm fresh veggies. Not inexpensive but it does support what they are doing right here in our little town.

I’m glad I started utilizing the gym at the Rec Center this summer. It’s part of my membership( which I was only using for swimming) and doing weights again has been very helpful in feeling stronger.

Our vegetable gardens did well thanks to my daughter and we had lots of good produce and herbs. I’m hoping we can add another raised bed this spring.

I didn’t do a lot of decluttering this year but there were still trips to the thrift store to drop off misc. I’m probably at a point where there is not a lot to declutter but always something that I find no longer useful or beautiful.

I’m sure there’s lots more that happened and I may add to this when I think about things as a record of 2022.

Looking back at the year… and ahead!

Posted in budgeting, budgets, camping, covid-19, home stuff, MDS, travel, Uncategorized by

The year that shall not be named, oh F#ck it, 2020, was certainly difficult.

All the Covid deaths, the necessary lockdowns, enormous food bills, canceling all our trips including Yosemite, Yellowstone, etc, and all the rest. Certainly, the election was totally anxiety-filled and still is until Biden is sworn in. The stuff trump is still pulling is appalling. ANd all the GOP spineless idiots. Some of the stuff that comes out of their mouths is truly mind-boggling. I read in the WP that the idiot( he’s a newly elected representative) that is possibly going to challenge the votes recently said,” he found out that there were three branches of government”. WTF? are you mentally challenged?

At least we’ve been healthy so there’s that. Both of my kids have their jobs, so that’s excellent.

Climate change is worrying with California fires and really no rain. We’ve had a few days but nothing like normal.

Barb, over at “Living Richly in Retirement”, is a great blogger. She recently moved to Texas( very brave in my opinion) and was just writing about going over her budget categories for the new year.

So I got to thinking that I’d like to do that too. I’m going to look back at food( of course the pandemic meant Instacart a number of times), what I spent on Amazon stuff( scary amount), and Home Depot( home improvement). Then I can realistically set some numbers for 2021. Like do we want to set a certain limit? I’m not sure. Basically, I usually look at , Can we afford it? So set amounts might be a good new way forward.

Catagories could be:

home improvements/ this might be just stuff around the house or bigger like the window replacements/

outside/yard stuff( especially in spring and summer we do spend a lot on seeds, plants, dirt/soil.

dining/take out. This isn’t too hard. I usually give us $50. which is pizza night and a taco night.

travel/camping, In a normal year when we go camping, it is paid for in advance, and usually, I bring or give us @ $200 for food or fun. I’d have to add up a normal year but based on 2019 I’d say $1,000.

Annual bills are fixed amounts so I know those numbers.

I’ll keep thinking of other areas too. Clothing etc is generally not a category as we really only buy something if we need it. I need some new Birkies this year and a new pair of jeans. Birthdays, anniversary, we don’t do much but it might be good to designate something.

Medical/ we have Medicare and supplemental plans so those amounts are in the monthly budget. We did get a SURPRISE ( not good) letter from UCD med center saying we still owed $2500 from Barclays transplant. I freaked out. So we’re waiting till she sends what it is in a letter. But I will call and challenge whatever it is as we were told over and over after we reached the deductible it was 100% covered so I have no idea where they are coming up with this. When we did the GoFundMe, $6000 of the 10,000 we got went to that deductible. So???? I’m not as freaked now since it usually takes me a few days to calm down but still it will need to be dealt with and how much going back to that paper work am I going to have to do??? Not happy about this. Plus, WTF, it’s now 18 months later.

Well, I’ll start my list with those things and see what else should be added.

Smoke, smoke and more smoke!!

Posted in California, husband, MDS, Political things, reading by

Our temperatures have gone way down to the ’80’s but we are still being choked by smoke. No blue skies and just haze constantly.

The pictures of SF are so apocalyptic. That same day our skies turned a bizarre purplish orange and it was dark at 3pm. My daughter said,” Just wait till Yellowstone blows”. Very reassuring.

The week has been overall ok. I had my Flu shot, the over 65 dose, and had a bit of a headache from it. In the past I’ve actually spiked a fever for maybe an hour then it’s gone. The pharmacist said the one dose is good for the whole season. Now B and the kids need to go get theirs. We usually all do it at the end of September or into October but this year I wanted to get ahead of it.

Barclay’s liver numbers went down but still not in the normal range. Just above high normal. At least that’s something. Although it’s been going up and then coming down. I still think it’s the Jakafi but he’s only on a single dose so who knows. He also has an IGIV next week since his immunoglobulins are down. It’s too be expected with his drugs. I will drop him off and Sachi will go get him. It’s not in Sacramento but Roseville so I’m planning to either go to Winco or Trader Joes.

It is so depressing about the fires,politics, everything. I just hope we can see some relief soon with the fires and the politics. I have to say though I am thrilled that tRump’s world is unraveling. He deserves nothing but shame and holding the place of “the worst president in American history”.

I’m planning on buying Woodward’s book only to support the fact he wrote it.

This is the book I use the recipe from for my pizza dough. I’ve made a number of her recipes and they are all good. I did buy her second book ” Let’s Stay in ” as a Christmas present for myself, but didnt like it all and gave it away.

This is the best recipe I have found so far. Always comes out great.

Catching up

Posted in budgeting, California, cancer, MDS, Uncategorized by

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

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

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

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

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

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

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

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

Go check it out.

 

Friday Stuff

Posted in cancer, MDS, prepper pantry, reading, Uncategorized, Walking by

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

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

 

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

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

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

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

 

 

Five on Friday

Posted in budgeting, cancer, MDS, Uncategorized, Walking by

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

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

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

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

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

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

Midweek catch up.

Posted in California, MDS, Uncategorized by

Yesterday we went to Sacramento to Clinic. Barclay is doing well but still has to stay on the Steroids and the new immunosuppressant. I was hoping the doctor would take him off but not yet.

I didn’t go in with him but instead went over to the Trader Joes for more stockpiling. This time I did some frozen food, teas, snacks, and wine. Then I sat in the car and read on my iPad. It’s always so busy down there I was glad to just sit it out.

Today, I’m not going to the gym but have to go smog the VW.  We didn’t walk either so maybe I’ll walk later in the park or use our exercise bike. ( It’s my daughters but we all use it occasionally).

It’s supposed to be lovely the next couple of days and then SNOW???? What the heck is up with that. To go from 70 degrees to 32 in a few days??? Weird.

 

Simple Sunday

Posted in budgeting, budgets, camping, cooking, Flylady, home improvement, home stuff, husband, kitchen remodel, MDS, medicare, Myeloma, Uncategorized by

It’s been a nice week although weird again with the holiday in the middle of the week. I kept thinking Thursday was Monday. Oh well, it seems that we’re back on course and today is Sunday.

We did a shop a Costco on Friday and didn’t overdo it. I bought extra coffee and TP so we won’t need to ‘run’ down there for those things. We are eyeing a new TV though. Ours is about 8 years old and still works but the sound quality isn’t the best. There are some sales for the super bowl so if I think we can swing it, I will.

B’s last SDI was this last week too. He did get a notice to have his doctor fill out a form about not returning to work, so I’m not sure if they would extend his benefits to use up the little he has left or if it’s just paperwork. What I read is the maximum award is 12months, so we’ll see. We’ll try and do that next week although he sees his doctor on Tuesday and I’m sure it won’t be in the mail by then.

This month will be the big test of how we do without the SDI. I know it’s going to be an adjustment. But at least we have no big bills in January just the car tags for the old van. Still, that’s $150. I have been saving quite a bit of the SDI so that I know I won’t be adding to the savings.

Also, we had to call on his Cobra as, just as expected, the Noxafil prescription came in at$1200.  This amount was the Medicare Part D prescrpiton plan that I’m not planning on using that’s why we’re paying the Cobra amount. I am not paying that much money when last month it was 0.00 co-pay.  So he called and the Cobra payment letter was just going out. So we did it online and then now we have to wait for it to get activated by the prescription plan. After that, we still don’t know what the co-pay will be since we haven’t reached any yearly deductible.  It’s all unsettled right now but next week we should know and hopefully, it’ll be resolved.

Plus we know that within a few months Noxafil will be reduced or eliminated so then we will cancel the Cobra and just use the Medicare Part D as all his other drugs are Tier 2. I think it’s only Noxafil that is Tier 5. What a Fucking scam is all I have to say.

Today is a gym day and we will go for our walk shortly.

Flylady zone is the kitchen and I’ll start that today but finish tomorrow.

I made a new recipe last night from another blogger( Teresa Kasner)

She lives along the Columbia River in an old beautiful farmhouse. Her pictures are outstanding. So the recipe was for Chicken with potatoes and spinach in a creamy parmesan sauce. It was good.

This week is Clinic for Barclay and our overnight trip. Plus whatever stress with the prescription stuff comes up.:(

I started a list of projects for the year and we’ll see how far we get.

  1. to drop the wood stove to floor level so that the footprint is lower and less of an eyesore. We built the platform specifically so we wouldn’t be bending to put wood in but it does take up a lot of floor space. This won’t cost a lot except added stove pipe( which is pricey) but we won’t need a lot. And some stone for the floor. Our woodstove is quite efficient and we will keep it for a few more years. Eventually, we will put in a gas/propane stove. But that’s maybe 5 years out still.
  2. We will be replacing windows in my daughter’s room. This will be maybe @ $1000 as it will be 2 windows replacing one large one. The Anderson windows we bought last summer are great and very energy efficient. So that ended up @ $800( I think).
  3. I’d like to also replace the bathroom window. Same size but just more energy efficient. All the windows in the house we’re replaced when we remodeled but they are now 25 years old so an upgrade will be nice.
  4. I don’t think we will get to any bathroom remodel this year.
  5. I think we are going to try and redo some of the kitchen. The biggest thing is the counters and sink( pipes underneath) really need to be redone. Getting a new pantry system from Ikea will be first on the list as that will be freestanding.

There’s always garden work and yard work. That’s kinda ongoing.

Barclay’s official retirement date is January 30. That’s 25 years. It’s hard to let go of, I think, because of the way it all happened with him getting sick. But how incredibly lucky we are for modern science that has given him a new chance without cancer. Even I can’t say that, although I have been extraordinarily lucky that my Myeloma has responded to treatment. Well, it is what it is.

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This was our dinner the other night. A small piece of filet mignon and a Beyond Meat sausage( which are delicious BTW).

 

 

Midweek Musings

Posted in cancer, cooking, MDS, medicare, simple foods, Uncategorized by

We had a nice drive to Sacramento yesterday for B’s clinic appt. Traffic moved fairly well thru the usual difficult areas( where I -80 merges to Business 80) and the downtown area.  His appt went well and the good news is they have reduced his Tacrolimus to every other day. This is the biggest drug that targets keeping at bay Graft vs Host. So we need to watch for any flare-ups but the NP was pretty confident that this is the time to start. So that means maybe by February he can go off Noxafil which is the Tier 5 that we are holding on to paying the Cobra for. Actually, with the plan set to restart in January, we’re not sure if the Cobra co-pay will reset( I’m assuming it will) and that means, well, I’m not sure how much the co-pay will so that’s a big question mark.

We are set up with Plan D medicare for him but that’s not what we’ll use as that immediately goes to Tier 5 and the 25% start. So way to much $. I guess we will just need to wait and see how it plays out. I’m hoping we can drop the Cobra by March.

After clinic we went to Trader Joes and OMG it was a madhouse. I almost walked right back out. But we managed thru and I got what we needed for Christmas( fondue, and ham) and lots of good food( french fries, they have the best frozen) and other things including TJ’s wine!

We stopped for a pizza slice and then headed home.

Today is a gym day. And then I need to hit Home depot for a bulb for my salt lamp.  Then home to bake some more cookies and maybe make the fudge.

Tonight is a new recipe for a spinach pie. One of the very few memories I have of my mother and this was not when I was young but @ 16, she made a spinach pie that was like a pizza. My sister doesn’t remember it so I’ve been trying to recreate it. This recipe calls for ricotta so maybe that’s what she used.

I’ll update after it’s done and give a review.

 

November hasn’t been a kind month

Posted in Blood test, Bone marrow transplant, cancer, MDS, Multiple myeloma, Uncategorized by

It will be a year tomorrow that Barclay was getting a blood test and was told to go to the ER immediately. He had almost 0 platelets, and extremely low RBC, WBC, and hemoglobins. Seriously bad.  I knew it was something bad and that this wasn’t just a blip.

 

He got in to see the local oncologist pretty quickly( like that same week). MDS was a possibility or aplastic anemia.  After getting more transfusions he got a BMB but the BMB wasn’t done right and the sample was inadequate.  This was when we were still with Sutter.  So eventually it was done correctly and the diagnosis was MDS high risk.

He then was transfusion-dependent and without a transplant would last maybe a year.

The rest is history.

Today was almost that year mark and another BMB.

Now my turn. It was right before Thanksgiving in 2003 when I had the fracture in my T-10.  Of course, I didn’t know that then or even that it was Multiple Myeloma. the NP I saw said a strained back. No Xray ( which would have at least seen something). I lived with that for 18 months till the spring of 2005 when I saw a doctor about some back surgery since my back still hadn’t really ever gotten 100% better.  Then I had an MRI. There was a plasmacytoma. The rest is history.

So November brings up some difficult emotions.

Transversing blood cancers is difficult. I’ve been fortunate that my Myeloma has responded when I’m in treatment.  I’m grateful I’m not starting treatment this month but hopefully can get to spring before I start.  B’s MDS is tricky and I hope he has a long if not permanent remission.

There’s always the questions” Why Us?” But I don’t bother with that anymore. Nor do I do prayers or the ‘God’ thing’.  Life is what it is and I believe we must live presently and with good intentions. There are no second-guessing these things.  I believe we must js\ust put one foot in front of the other and

remember what Bilbo Baggins says” It’s dangerous business going out your front door”.