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 lost another chicken yesterday. It was one of our black and white ones. I looked all over for feathers but nada. I’m guessing it was the fox since he’s coming nightly to try and get compost( it’s closed). But foxes do hunt in the day. It always makes me sad to lose one. Now there are only 4. We aren’t planning on getting chickens this year but maybe next. I think we all need a break from the daily chicken routine. But I do love having chickens though and they eat bugs and keep snakes away. Still, the morning and night routines do get old and we have to lock them up as the raccoons would get in their pen.

I’m still checking daily on jury duty but there are 2 more days and last time I did get called on Friday which was weird.

There’s still a lot of uncertainty with things financially and with B finally giving his resignation. We think now that the long term disability we were counting on for the next 5 months won’t happen since he will be retired from UNFI. He’s still medically unable to work but because he will have left UNFI by Feb 1st we think they will say that’s that then.  Has anyone had this happen or been in a similar situation and still was able to get the long term disability? Hartford has tried everything not to pay and succeeded so I’m guessing they will win on this one too.

Some good news is though Merck, the drug company, approved B getting the Tier 5 drug Noxafil for free. That would have been an initial $2000 approx for the first month. I think it was @ 1750 or around that. So that is great news.

With that being resolved we can now drop the Cobra and just do Medicare and supplementals. It’s kinda scary giving up the Cobra but really it’s been a royal PITA. Especially the prescription part.  The one thing I need to check is if we can keep the Cobra for just the dental and vision. Before with the other provider, we could but as of January 1st, the provider changed. Actually, that’s when the issues with the prescription part started happening.

So still lots of things up in the air.

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).

 

 

As 2019 comes to a close

It has been a year of highs and lows.

Lots of things were awful with B’s diagnosis and then being transfusion dependent. Lots of chemo visits weekly. But in spite of that, there have some great things. His brother was a 10/10 match for the BMT and that was amazing.

Being at UCD med center in the BMT unit for a month was hard, very hard, but it all went way better than expected. Staying at the Kiwanis in our friends RV was also great and made the whole experience of having to be there almost 3 weeks delightful. Being able to be just minutes from the clinic made it all worth it.

Recovery and gaining strength and energy back has been slow but sure. B is doing amazing and he is almost 7 months post-transplant.

There has been no major graft vs host although he must remain vigilant as that can happen even down the road.  Now he is tapering off immunosuppressants and that means less prescriptions. He will still need his vaccinations sometime next year.

So the year really was a mixed bag of emotions but overall I feel very positive about it. We did fine financially with the extra GoFund Me and the SDI. This week will be his last SDI and I am totally grateful to have had NOT to worry about money. After my transplant in 2006 and that following year, we were in serious,serious debt and it was awful. There were no GoFundME things or networks to receive financial help. I did have 2 friends that were very generous and that was a blessing.

At the end of this year, I feel grateful for my health and my children’s health. Both of my children have excellent jobs that they earned this year.

B will also officially retire as going back to full time just isn’t going to work for him. I will miss the paychecks and being able to travel with him, but honestly, he is 69 and with everything that has happened, life is just too short to go back to a job even if it’s only for another year. Who knows what will happen and he has this chance to retire. Social Security will be tough but hey, so what! We have struggled before and made it and if we can only do so much then so be it. Actually, I’m just grateful we have the little we will have coming in as it will cover our basics.

WE didn’t do any traveling and that was okay. We are planning something once a month for  2020. Next month we are planning an overnight to Chico where B has a free room at one of the nicer hotels downtown. We are planning to have dinner at a place I’ve wanted to go forever called the Red Tavern. I can’t remember where I read about it over 5 years ago, but it’s supposed to one of the best restaurants around.

House wise, we didn’t do anything major except outside and tree removal.  We did replace two windows and they look great. Next year we will replace a few more windows in the bathroom and kitchen and my daughter’s room as well. Next year, we hope to work on the kitchen and do a minor remodel( mostly the sink and counter as it is 25 years old this summer and the sink connections are pretty rusty.

So life keeps on keeping on and it really is a wonderful life.

Friday the 13th

I love Friday the 13th. Mostly, I just like the number 13. Why? I have no idea. Well on to 5 on Friday or maybe even Frugal Friday.

Our trip to Trader Joes was not frugal but did get almost everything I need for Christmas dinner and just holiday eating. Think Brie, crackers, pub cheese, etc.

I still need the lasagna stuff but that’s an easy Safeway trip.

It’s raining today but we did get a walk-in with our umbrellas. It was only drizzling so not bad. I’m planning on going to the gym and then maybe an errand.

Barclay is going to officially retire at the end of January from UNFI. That’s his 25-year anniversary. It was a hard decision, really but I think the right one. His HR said though he needs a medical release to return to work from his doctor and then he needs to be reinstated in order to then retire. It seems like a lot but I guess they have rules. So that’s what he’ll do.  He also is going to check about the long term disability that he could possibly get for a few months but that’s pretty iffy.  I guess we’ll find out soon enough.

Tonight is pizza night and I’m doing homemade. It’s still raining:(

BTW, if you’re looking for a good murder/mystery series on Netflix,  Le Foret, which is in French with subtitles is superb and the companion series ‘the Black Spot’ is terrific. Excellent characters and the scenery, shot in France and Belgium is great.

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.

Midweek things

Yesterday we went to clinic and everything looks good for Barclay. Nothing new or unusual.  One of his anti-rejection drugs has been hard to regulate and its number was up again, but the doctor said to keep on the same dose. Actually, his energy level is noticeably increased and his overall demeanor is more present!!! He is now at almost day 80post transplant.

From there we went to Corti Bros. and I got some French prosciutto and some steak that ‘Mike’ the butcher recommended for kabobs. So that was really fun.

Then we hit up Trader Joes for some more groceries. This is the TJ’s near UCD med center in the beautiful Tahoe Park area. It’s a really nice store. So taking away the 2 bottles of French wine I bought I came in at $90. So my grocery budget of $125 for the week is about $20 over. Not too bad.

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Here’s the birthday boy!!! He didn’t get his height from his father that’s for sure!!!

Unfortunately, we walked out of clinic and totally forgot to get the prescriptions. So, my daughter or I will need to drive down since he doesn’t have enough to get to next Tuesday.  Bummer, but I do need toilet paper at Costco so I/she can do that too.

Today is my sweet boys birthday. 25 years ago he came into this world. What an absolute joy he was.!!! He’s a fine young man. Very talented and handsome too!!!  So I’m doing BBQ chicken and those steak kabobs. For the veggie, I’ll make tofu kabobs with veggies.

 

I’m planning on going to the gym this morning and then the bank.

Early morning

We need to be out by 6:30 so we can get his labs by 8:00 am in Sacramento and then clinic is at 8:30am with the NP. I think we will be out quicker this time.

  Speaking of labs my numbers came back with another increase:( So Kappa is at 25. Lambda went down to 11.3 but with that, the ratio went to 2.25. It’s still not alarming numbers and only slightly over high normal but it is a trend for sure. High normal for the ratio is 1.65 so .6 over. I’m sure my doctor is not worried at this point and I see him next week so we can talk.

Anyway, this is a good lesson for me to not obsess and just know treatment will resume at some point. I’m actually proud of myself for not being too nuts about it.  I guess that’s a good thing?

After clinic, I’m going to the gourmet store called Corti brothers. When we first moved to California in 1975, we would shop at the other Corti bros location. I had just started graduate school at Sac State and we practically lived in Sacramento. We were living in Foresthill(the same area we’re in today but not the same direction) and I was driving down 2-3 times a week. Back then there was little traffic on I-80 at night and during the morning.  Now any time of day I -80 is crazy. Anyway back to Corti Bros. So when I was at Kiwanis house and shopping over at Save Mart, I looked over and saw the sign for Corti Bros.  I wasn’t planning to go in till the person who owns the RV said ‘Hey, you should go into Corti Bros. ” So I did and first, the deli is amazing and I discovered they have the French ham I have always wanted to try. Of course, I thought I’d have to go to France but no, here it was. It was amazing. Since I do love cooking and food, it’s a fun store to look around in. Today, I’m getting some olives from their amazing olive bar and some special burger blend for 4th of July.

All in all, it should be a good day!

 

Things are going great!!

First things first, TODAY is my 14th year since diagnosis. I was standing in our driveway and Barclay took the phone call from the awful doctor. Doesn’t matter, here I am!!!!  So onward. Next week I get my labs in the middle of all this and we’ll see what my numbers do. Up or down??? I’ll deal with it one way or another.

It’s the weekend and B has no labs till Monday so we can relax. I’m heading over to Ikea as they charged me for 2 paring knives but I only bought one. I’m not sure how that will work but I’ll try. Plus I bought this darling fold out bed for our daughter to sleep on here but then discovered that the couch does fold down to a bed. Okay, Barclay figured it out I just kinda looked at it and didn’t connect the dots. Oh, well.  So I will return that(insert sad face as it’s really cute). But I don’t need it now and then at home I’d have to store it so, decision made.

It’s all going really well and so far and now it’s just waiting till we can go home. Although next week is labs one day, clinic the next and then repeat so going home isn’t too feasible.

Tomorrow both kids are coming down so we can have Fathers day here.  They are doing a great job keeping things going at home. Which, surprisingly, is a lot of work mostly due to having pets, chickens and large garden areas.

We are off for a small walk and BTW Sacramento is having a serious cool down so we are VERY comfortable…. Todays high is only going to be 84 so really nice.

Decisions…..

So yesterday was insanely busy.

We had to be out the door at 7:15am to get to the local oncologists’ appt. That went well. Then B had to go get his labs.

Then we decided to go get bagels at our local organic bakery because we were going to head to Sacramento to check out the Kiwanis house and we wanted to AVOID the 8 am traffic. So we relaxed and enjoyed our coffee and bagels.

We had no stops with traffic and got down to UCD med center in 45 minutes. First, we went and toured the Kiwanis housing and as expected the rooms are quite small and the shared kitchen just didn’t do anything for us. BUT, we toured the RV parking and LOVED it.  So there is a possibility of using a friends RV or if we moved quickly buy a used small one that we were planning on doing in the fall anyway.

We asked the social worker to put in the request so at least we have that in place. There’s no guarantee but hopefully, that would be a possibility.

Then while we were there the social worker called and said there may be a problem with B’s brother’s blood something that has an antibody in it so B needed to get a blood test for that ASAP. Fortunately, we were right there so we did that.

Next, we checked out the Marriot and that was crazy expensive even though very nice. There were two nights that the cost increased to $279 a night.  We ruled that out quickly.

Then we headed to the Cannabis place and B got some chocolates since smoking is not allowed with the transplant.

After that, we went to the Sacramento Co-op and joined as I plan to shop there while we’re down there and then even later go once a month. It is a beautiful store and I found a few items like cranberry beans I’ve wanted. ( they’re like pinto beans). Plus they have an olive bar!!

Finally, we headed up Hwy 50 to check out the Extended stay hotel and surprisingly we both thought it was okay even if it was the furthest away. ( 10 minutes or so without stop and go traffic). Not ideal but doable so we’re going to get the referral to the Cancer Society and put that in as a backup plan.

By this time it was close to one and we were pretty wiped out. I came home and took a nap.

We’re hoping there isn’t a problem with the antibody as that would mean back to square one with the National Donor Bank. We should know in a day or two and we see the transplant doctor next week so…

I’m heading out to the koffee klatch to see everyone for the last time probably till the end of summer so that’ll be nice. I think everyone is planning on being there.

Dinner is salad and chicken kabobs( marinated in yogurt). Maybe some grilled tofu too.