Five on Friday

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.

The state of affairs.

Things are good this week with 2 doctor appointments down.

B had clinic on Tuesday and I drove him to UCD med center as it was an early appointment so there was traffic.  He’s back on prednisone for a rash but it is minor and seems gone now.  I sat in the car dealing with the financial fallout from the Cobra.  What has happened is this: His group insurance ended as of 7/31 and that’s when we initiated the Cobra thinking at $700 a month that would take care of all the bills.

Ha!!! NOw UHC Cobra is still saying because he was Medicare ELIGIBLE they won’t cover the full costs. WTF????? Well, long story short, after numerous calls we are on the hook for the August appointments.  I made payment arrangements while I was waiting for him to finish up at clinic.  All his appointments from then on were covered by Medicare. But we still were paying the Cobra till actually just the end of last month( January). Not sure this was necessary but open enrollment hadn’t quite started so even though we could have signed him up with special circumstances, we just left the cobra in place.

All I can say is if you’re ever faced with losing group coverage and have to go on Cobra …DON”T.  Overall, the cost factor doesn’t cut it or you need to absolutely clear what the cover. In our case, I just assumed everything was covered.

So then yesterday, I had to drive back down to Mercy cancer center for my appointment.  It’s kinda what I thought he would say is yes, it’s going up but too soon to start treatment and to keep thinking of this as smoldering myeloma.  So it’s watch and wait. That’s okay and when the time comes and my numbers are going up faster, I’m sure we will move ahead.

Today, I’m going to do some cooking. I’ve made hardboiled eggs and I’m going to make the olive and feta topping again. Plus I ‘going to grill some chicken for lunches and dinner. I think I’ll grill some onions while I’m at it.

I have some house chores to catch up on and then I’m going to hit the gym.

 

Friday Stuff

Happy Valentine’s Day!

We don’t do much special since I hate crowds and would not even consider a dinner out on VD day. I did buy some nice carnations at Safeway and some roses at Costco so they are on the table looking pretty.

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It’s been a maddening week trying to get a camping reservation. Every single morning ( including today) I have been on the computer at 7am on the dot( watching the second hand) to reserve a spot and absolutely NO LUCK!

There are so many people trying to get reservations for August that it’s almost impossible. Today, I’m trying for 5 different spots and not sure if that will slow down the computer. But if I don’t do the 5 then there’s no chance. I’ll update after 7am.

NOPE>>>>>NADA>>>>>ZILCH

Let’s see what else. Barclay had to go back down to UCD med center to pick up an immunosuppressant drug because he’s had skin itching and slight rash.  That’s the one he’s been off of since December so they don’t want any GVSH happening.  We’re also dealing with medical bills from August that the Cobra was supposed to cover and they don’t have it straight. I’m ready to just chuck it and make payments. We’ve been trying to get this squared away for months and they just aren’t getting it.   They keep saying he had 2 insurances but he didn’t an only had the Cobra. What a PITA>!

I’ve applied to the LLS for my grant for 2020 and that will pay my AARP supplemental insurance.  They do such an amazing job and I’m grateful for the grant. If I ever have to go back on Revlimid they would help with that co-pay as Revlimid is a tier 5 drug and runs about $20,000 a month. With insurance you need to go thru the donut hole and then still it runs about $1500 a month.  I can’t see me going back on Revlimid but who knows.

Speaking of which, my labs came back very disappointing. They almost double!! ( well the Kappa light chains did) so that is a very bad thing.  I see my doctor next week so I’ll see how he sees this change. My ratio went up too but still is overall low at 6.58 mg/L. It’s the ratio that is more important. Still, it freaks me out that myeloma cancer cells are activating and multiplying. WTF….  well, I knew it would happen sooner or later as Multiple Myeloma is incurable but can be held in check.

Today I’m just planning on staying home and doing somethings around the house. I need to mop the kitchen floor and wipe the bathroom.

Tonight I think I’ll make a pizza Margherita although I ‘d need to run to the market for some fresh basil.

Stuff

What a week!

The colonoscopy went fine although there were polyps so I will need to do another in 3 years? 5? not sure, as I haven’t gotten a message from the doctor yet. Oh well, the best-laid plans of mice and men:(

Now I’m feeling under the weather. I think my body just saying enough already and to rest. On top of the 2 days of jury duty last Thursday and Friday, then the colonoscopy prep on Monday and then out the door Tuesday at 6:30 am, all a bit much for me.  So today I’m just going to take it easy and drink lots of lemon water.

I am going to make marmalade although no one locally has Seville oranges. I’d probably need to go to Whole Foods down the hill and I’m not doing that.

The budget is set for February and I did take cash for groceries for the week.   I’m going to budget $125 a week. I went to Target yesterday and bought slice cheese and a few other things but other than that haven’t spent any extra money.

We were thinking of going to the coast but now it looks like it’s going to be a little too cool so probably not. Cool is around 50degrees.556B21DA-3A6C-409A-855E-C00C782CA2F6.jpeg

This was one of my Christmas presents as I’ve always wanted a French candle. Clearly not frugal but lovely. Would I get another, No! It had a lovely fragrance but the cost didn’t really justify that. Well, now it’s a pen holder. I also have always wanted a Jo Malone orange blossom candle. it’s in the same price range so probably not.

I have an appointment for my labs tomorrow. Oh, joy another test. Probably not good news so, WTF, right?

Simple Sunday

It’s still cloudy and chilly here in Northern California. There was a big storm that came thru Wednesday and Thursday with I 80 getting closed due to spin-outs. The temperatures are supposed to go into the mid50’s and low 60’s next week so that’s better.

When it’s this chilly which is all relative, I don’t wander around outside much but I’ve decided to start doing at least 15 min outside even if it’s just raking.

Of course, I walk most mornings very early and it’s quite freezing. Literally 32 degrees, but somehow that’s just my MO.

I’ve had jury duty this week and I go one day next week. It’s all quite interesting but for me, with my IBS, I get quite nervous about bathroom access. I did fine because I didn’t eat in the morning.  I’m keeping track of what I’m eating to see what, if any, pattern there is. Plus I am somewhat claustrophobic so being confined to the jury room is a little stressful.  But I made it along with 12 others.

I’m definitely not used to being out all day and that was very stressful. My daughter made dinner both nights so that was nice.

I canceled the medical part of the Cobra so hopefully, that went thru as you do it by email. It takes up to 7 business days to reflect so I’ll be checking the online site. We did request to keep the dental and vision at least until I get that covered by something else. What do other people do? Is it AARP that has a separate dental plan and what about vision?

B was also able to get the very last of his 2019 SDI because we had the doctor say he was still disabled. It wasn’t a lot but it will certainly help.

We went to Costco and did some grocery shopping and filled the car up with Costco gas.

I read that there has been a norovirus at Yosemite from mainly people eating at the Ahwahnee so now we are decided to probably not go since we cannot even risk B getting something like that as it could activater his GvsH.  we have some time to think about it but there are other places we can go. We’ll see…..

I didn’t get to the gym today so I will go tomorrow.

 

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”.