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”.

Simple Sunday

Well, it’s a new week starting and I’m glad. Last week really was never-ending with stuff to do and I felt stressed all week.

We did get B signed up for Medicare Part D. We actually won’t use it for his Noxafil( Tier 5 drug) because it will be $4900. So we will keep the Cobra for now so that his prescriptions are covered that way. Hopefully, that will work. He won’t be on Noxafil forever, just maybe 3-4 more months.  So he is on Medicare and all signed up for Plan F and Part D.

This week I see my eye doctor for my quarterly check on my macular pucker. I’ll need my eye dilated which I hate. But it has to be done. I can’t see a lot out of my right eye but my left eye makes up for it.  Although when I went to renew my license and get the Real ID, I had to take the eye test and didn’t realize they test your eyes individually.  I panicked a little as I know that eye is around 20/60. but I squeaked by. Next time I’m not so sure. I could have surgery but it’s not guaranteed. But I still may go that route yet.

Other than that it will be a slow week and I need it.

I plan on going to the gym 3 times and keep walking in the mornings.

The fall chores are getting done and B has been busy doing stuff that needs attention. Painting, fixing some concrete steps, tidying the yard, putting away BBQs and all the fall things that need doing.

This week I plan on doing some painting outside on the window trim. That was the 2 windows he put in last month.

In not so good news, my Kappa light chains jumped 13points up. And my kappa/ lambda ratio really jumped to 3.68 mg/L. That’s because when my Kappa goes up my Lambda stays low so the ratio goes up.  Well, Fuck it, not much I can do and I do feel ok. I see Dr. L  at the very end of the month so once again, I’ll bring up when to start. I hope it can wait till 2020. I figure 2 more months and if it goes up 2 more times and hasn’t , hit 100 I can hold off on treatment. I don’t mind going back into treatment when necessary, it’s the dexamethasone that is so difficult. I pretty much lose 2 days a week. Oh well, F#*k it all. I’ve been doing this since 2005 so I guess I should be used to it. Although you kinda know you’ve been a cancer patient for so long, your family members forget to ask how your labs are.

This week is the kitchen zone so I will start that today.

Our fall weather is really spectacular. Leaves are turning and the mornings are chilly but by afternoon it’s just perfect. We had a fire outside last night because I wanted to.

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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Midweek musings

I had a good doctor visit. As I mentioned, my numbers are going up (kappa light chains) but as he said it is slowly going up and I’m a long way to where I started out 3 1/2 years ago at 1010 mg/L kappa light chains. So I’m ok and not panicking. It went up 6 points to 31.7 so an increase. Lambda is in the normal range and looking back at my numbers, Lambda was always in the normal range. The ratio also increased to 2.66 from 2.33 so increase there too. When I went back to when I started Velcade my ratio at it’s highest was 68.25 mg/L so that says something about where I started.

All in all, I’m ok with it for now. It’s always weird to think cancer cells are in your body but one must be positive and philosophical at the same time.

We’re in for cooler temperatures which will be most welcome.

My daughter is drying some cherry tomatoes since we have so many and I really don’t want them to waste. Sundried tomatoes in the winter are nice additions to pasta.

Our last appt is Friday till next week. Driving to Sacramento has been awful with the traffic. Driving home has been a lot easier. I’m guessing with school starting and work there are more people on the freeway.

After next week, we are on a 2-week clinic schedule and that will be very nice.

 

What’s next?

This is a busy week with appt’s almost every day.

Today I have an appt at DMV, yes, the dreaded DMV, to get my license renewed and try and get the real ID. The real ID requires a certified birth certificate and lots of other proof pf residency things. One reason I persisted in the NYC birth certificate debacle is I knew that this was coming. So we’ll see how it goes and I’ll report back.

Tomorrow is clinic and labs and my daughter has volunteered to drive.

Wednesday I see my oncologist so I didn’t want to have to drive 2 days in a row. I’m going to go over my old lab results when my light chains were over 1,000 mg/L. I just want to hear his assessment of when to be more concerned. I’m guessing he’ll say the same thing, that when my numbers are much higher.

Then Thursday is open.

Friday is back down to the urologist for an endoscopy to see if there is any blockage or how does the prostate look? It is an office procedure so no sedation.

We also need to get the oil changed in the car and will do that Thursday. B said he’d go. So that would be his first time out driving the Santa Fe in a while. He’s definitely able to do that now and isn’t shakey. So progress!

The zone this week is the living room and I finished that yesterday. Since our front room is small and there’s not a lot of clutter I was able to finish it in about 15 minutes. I washed windows, dusted, checked my plants and washed the mirrors. That’s about it. I do look regularly what to declutter but right now I’m content with what’s in the bookcase and also the Heywood hutch. In the Heywood is my pinecone ware so that stays. I do love looking at it and using it too!