Simple Sunday

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

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

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”.

It’s been a busy but productive week

We had a nightmare drive to Sacramento on Tuesday. I have to say this really was the first time it was so awful. First off, we stopped to get gas and the car in front of us( so we couldn’t get to the pump) had what appeared to be someone living out of their car. We waited politely and waited and finally, I backed up and zoomed around to get to another pump.  The lady must have been in the bathroom washing, but then after she pumped her gas she proceeded to wash her car windows. I was getting frustrated at this point and this put us almost 15 minutes behind.

Then traffic was really heavy for some reason and I knew we would be late for B’s infusion appt( to flush his port and labs). We were 20 minutes late. That is a first.

Well, it all ended great with the NP telling us that the BMB results were excellent and chimera was 99%. Truly science is amazing.

We both got our Flu shots and both are arms a little sore. But not too bad. So that’s done.

B got his LLS reimbursement for the insurance so that’s a big deal and in the coming months will make a huge difference. Thank You LLS donors who make these grants possible.

Today I’m heading into AAA to sign up for the home insurance( that they canceled  and we now will be with them but they’re underwritten.) Plus it’s about $600. more annually. WTF!!!!

I might go to the gym afterward or I may just flake. I’ll see how it goes.

I was trying to plan another mini trip to Capitola but Airbnb’s are really expensive and so are hotels. We decided not to spend money on that. I checked New Brighton but it is all full, probably with retirees in huge RVs. 😦

Barclay is still processing going back to work but I don’t want to give up his SDI yet. That money is non-taxable so we will not owe next year. But it only goes thru December and that’s it. But it has been a huge blessing. If he goes back it won’t be his old job as that’s been given to a co-worker and he couldn’t really travel like he did.  His boss has indicated he could do something from home ( ideal ) but he’s still not sure. He’s only 4 1/2 months post-transplant and most people don’t go back to work for a year or not at all.

If anyone has any thoughts or input I’d appreciate the ideas as we definitely conflicted about it.

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Simple Sunday

A rainy evening with the wind. Plus, the temperatures have really dropped and we will need to start a fire in the woodstove.

Today, I’m doing the Living room zone and because October first is Tuesday another zone happens. That will be the entryway zone. I include our sunporch as that is the main door people see and use.  I brought in some of the geraniums and I think I will let them winter over in there. The sunporch is not heated but on sunny days it does warm up nicely.

I’m going to the gym later and then into Safeway for milk, cream, a whole chicken, and a few other things. My grocery bill has been low this week so I’m pleased. I made lentil soup from the new cookbook I splurged on for my birthday” Two Peas and their Pod”.

She doesn’t use a tomato base, but I always do. I think it adds more depth. I use the IP and it was delicious. This weeks menu includes the lentil soup, a homemade lasagna ( in the freezer), some sort of taco dinner, and maybe brinner with pancakes.  I’ve also been wanting spinach soup which is one of my favorite.

I used the “Two Peas” cookbook for a scone recipe and it was good but I made need to tweak it a little. I thought they were just a tad bit dense. I could have stirred them too much too as this will affect them. I’ll try again at some time.

Also, this week B has his appt with the transplant doctor who I assume is going to go over the BMB results and the chimera results. It all seemed good but we’ll see how he interprets it. Then B has labs and a port flush.

I’m planning on going into AAA this week and redo our house insurance that got canceled by AAA. They still offer it but with the new California Fair insurance. With all the wildfire claims, I think every insurance company is canceling their own policies and doing the rider with CFI.  Then I need to pay for B’s motorcycle registration too.

Five or(five hundred) on Friday

It has been a LONG week.

We made it down to UCD fine even with traffic and the endoscopy went fine too. No problems with the prostate. He just has an enlarged bladder and does need to catheterize at least once a day. I guess if that’s the worse, it’s not so bad.

Yesterday though was a nightmare day.

  • first we got a letter stating AAA was canceling our house insurance because of fire dangers in California. Great. Now we will have to find a new insurer and it’s bound to be A LOT more expensive.
  • Then we get a letter actually 2 letters from the Cobra people for B’s insurance. We owe $710 per month. I thought we’d already had paid the first two months. I called and NOPE that was not to them. Great, more money out the window.
  • I called the dedicated hotline for employees and said we’d paid the $1200. So just this afternoon she called back and said NOPE, that was for June and July when the company transitioned to the new insurance. I looked at the paystub and she was right. Nothing was taken out.   Great:(
  • Then on a positive note and money. B got his LLS grant approved for MDS and they will reimburse him the first amount of the cobra just covering him. so we should get that and it’ll help. We will submit the amount for the second month next week.
  • Then I’m at the Sutter Medical site getting ready to pay the installment and I see another whole set of charges. WTF!!!!! So I call Sutter and she says oh they said (UHC) he wasn’t covered for those dates. By this time I was seeing fire and smoke was coming out of my ears. I then called UHC and the VERY nice rep says let me check. She checks and says clearly there was some wrong coding as he was covered. Give me a F#@king Break.
  • Let see, I think that’s everything. But there could be more I’m blocking out.

Well, I’m exhausted from it all. Too much paperwork, money stuff, and confusion. I think I see the wine bottle waiting for me.

Frugal Friday

No, not really. Although we haven’t been spending money carelessly. Our grocery budget is our biggest variable expense. I budget $200 a week for everything including pet supplies, non-food items, wine, food and misc. That seems to be a good amount for us.

But when you factor in Costco trips like in August, I definitely go over.  The Costco trips are often items that last a few months if not more. I’ve tried separating out non-food and then I get all confused and lose track of what was what so if I just lump it all together it works better for me.

For August I’m trying out $125 a week and I’ll see how that goes.

We aren’t going on any trips this year due to the medical stuff so there are no expenses there.

We also can’t eat out as B can’t have restaurant food yet. Although I have gotten him In an Out french fries and a shake as he needs to gain back about 20lbs. So we don’t really have an eating out budget. I have gotten a pizza or two so there’s that.

We also don’t have any big projects around the house but there are a few things. We absolutely need to fix our step coming out the door. It is awkward and has two levels so he and our daughter will put down a new concrete step that covers both and goes out farther. We wanted to build a deck out level from the front door and then a step-down but a deck would probably run us $3-5,000. So not now.

We’re on the fence about getting more trees down. I think we will call and see about at least 2 and get an estimate. We still have too many trees that are very big around the house.  But that too is a very expensive project.

We still have co-pays on the medical side too and the GFM is being used for that but it’s getting low.   The $6,000 from the beginning of the year is almost paid off. The transplant co-pays haven’t even shown up yet. Yikes, that could be scary.

Well, all in all, we’re doing okay.