Another sad day…

We lost Finnie yesterday.

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4BC83E01-6F8F-4B89-835A-B8DAA105BC0A.jpegAlmost a month exactly from when Ollie died. Finnie seemed to be doing okay. We took him to the vet and he did a round of antibiotics but over this last week he got worse. We’re not really sure what it was but he was acting very weird and then confused and not very aware of things. So we called the vet and he went to kitty heaven. It’s been a hard last 9 months with both dogs and now both our cats. The cats were 17 years old and were adopted together so maybe they were so bonded or something. Anyway, it’s lonely in the morning without them yowling for cream and food. I’m sure we will get some kitties down the road but not for a while yet.

I think pets teach us so much about life and death. Plus they are just present. A lot to be learned from that alone.

The weather is still blah. Not sunny not rainy. Just grey. We walked this morning and only the one other dog walker was there so that was nice.

My labs came in and it’s okay. My kappa light chains went to 110mg/L so an 18 point increase and Lambda went down to 12mg/L. Looking back over my labs since 2015 my Lambda never did go out of normal range but that’s because my myeloma is kappa. So now the ratio is up to 9.23mg/L  So going up.

I’m planning to not go down to Sac at the end of the month but the assistant said we could do a video conference so that’s what I’ll do.  Really nothing different is going to be said until he’s ready for me to start treatment.  Sigh:(

I’m going to make some cookies today and then move some pantry stuff. My order of flour should be showing up today. That’s a good thing as I’m starting a Tartine bread leaven and will need the flour tomorrow.

 

 

Friday Stuff, not Frugal

We have baby chicks. They just showed up this morning. We ordered 10 Leghorns. I wanted Bardrock but they weren’t sexted. If you get them non -sexted you will end up with some roosters. Roosters are kind of a PITA really.  Anyway, since we’ve decided to not do the camping trips at least till August, I figured we would be here at home and we might as well get chickens. I really like chickens and they are interesting birds. Plus they do keep bugs at bay and also snakes. Of course, you don’t get eggs for 4-5 months but that’s ok.

Then, let’s see, yesterday was Barclay’s IVG infusion. We got there by 10:30 and the parking lot was pretty empty and the freeways were not too bad at all. I waited in the car reading on my iPad, looking at the news, sending a few texts and trying to nap. He was done by 2 pm so long but not bad. We were home by 3 pm.

My son cooked us a nice dinner of homemade mac and cheese and roasted asparagus. It was nice not to cook. Tonight is pizza night and the dough is in the fridge doing a sow rise.

I ordered 25 lbs of flour and it should be delivered today. This is Central Milling which I usually get at Costco but they are out and I’m not going there anyway for quite a while.

I’ve had yeast in the freezer and when I went to use it it didn’t really puff up so I may have to track down some fresh yeast but in the meantime, the pizza dough was doing an ok rise.  The yeast is supposed to be good for a year in the freezer so maybe it’s just been in there a little too long.

I have spent A LOT OF MONEY on supplies. I’m just going to call this emergency food stores.  Since March 3 when I went to Winco/Costco I’ve spent over $1000 in bulk foods, pantry foods, regular store stuff and more. Most of it will last a long time as it can be used over the coming months but still, it’s a little frightening to see what I’ve spent.  Next week I will go early to our local store for milk and some fresh stuff and wine if we need it.   I did check out some of the wine delivery services but it’s more expensive than I want.  I also was checking out Instacart for delivery but so far I wasn’t that impressed.  Maybe I look at it next week. For now we at set.

 Next week starts almost a month of being home and honestly, I don’t see it changing up soon. I’m certainly not going out to just be out.  I have my labs next week and then both my dental appts are postponed and my eye exam. I haven’t canceled my oncology appt yet and that’s not till he end of April but if my labs aren’t shocking and it’s still just going up I’ll message him and say how bout next month.

Be safe and stay home!

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.

Simple Sunday

I ended up having this head/sinus cold thing.  Not debilitating but still not great. I haven’t been to the gym as I don’t want to be THAT person I glare at who’s snotting away over by the weight machines.  Maybe tomorrow if my nose dries up:)

The only logical place I got this was the hospital as I didn’t go out Monday, Tuesday was the procedure,  went to the gym Thursday but then starting getting sickish Thursday.  so that’s about the right incubation time 2 -3 days. Oh well, it’ll pass.

I changed my labs till tomorrow but I’d guess my WBC will be affected with a cold. The other tests aren’t really affected by a virus.

I did walk this morning and that was ok.

Barclay’s official last day of work was Friday. The end of 25 years with UNFI. I still wish it had been different that it wasn’t because of getting MDS and then having an allo transplant but life is what it is. Since we don’t have a much in the way of retirement it’ll be challenging but  I guess we’ll do ok. If not we could always sell and go rent. Although rents are way more than our mortgage in this area. So who knows really.

Today is the super bowl and my son has a Hulu account so he’s going to log in and maybe we can catch some of the game. We used to love Super bowl and back in the day watched the games. I guess we stopped that, maybe 10 years ago. It started to just seem like they were Roman games with gladiators and kinda weird.

This coming week is open and that will be nice. I’m going to go to the Nevada Co library for some holds.

I might go to Ikea this week if the pantry I want is in stock. It comes and goes pretty quickly. Our space is so limited that it has to be a certain size and this one has on an open shelf for a microwave. We don’t use the microwave much except for popcorn and heating leftover coffee. I can make popcorn on the stove and its quite easy but sometimes the convenience of a bag wins.

I finished our taxes which were very easy as there wasn’t much in taxable income. With SS income and the money paid out from B’s sick leave( he had taxes taken out on this, thus the refund) so we’ll get a small refund. That’s why I feel okay getting the Ikea pantry which is about $200.

Here’s the marmalade I made.

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the one jar lid is one from last year and I will put this one in the fridge.

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It came out really well and has a beautiful color. I stopped at Whole Foods but they did not have Sevilles.  These were just navel oranges from the store.  Next time I would slice the rind super thin.

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Plus 2 small jars for the fridge as well. I still have 4 more organic navels from Whole Foods so I might do another batch.

This week is the kitchen zone if you follow Flylady.  I will start but probably wait till I feel better to finish it.

 

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

Whew, jury duty was brutal. We ended up a hung jury as one juror was deadlocked. I at first was on the not guilty side and then after reviewing all the evidence went with a guilty verdict. But it didn’t change the outcome as a mistrial was declared. Not sure how the lawyers proceed but that’s not my worry. I was completely wiped out by the end.

It’s raining here quite hard so no walk today. The Frogg Toggs I got for Christmas needs to be returned as they don’t fit quite right. So no walking today unless it lets up( just checked weather and no letting up).

I’m planning on going to the gym today as tomorrow is my prep day for the dreaded colonoscopy.  I’m sure I’ll get thru as I’ve clearly been thru worst.

I need to get my labs done this week too and think I’ll plan on Thursday.  I see my doctor in February(middle) so there’s time but I like to know my results before. If it continues as it has been my rise should be around 11 points taking me to @ 65mg/L Kappa light chains. The ratio will probably go up to. I actually feel ok but Myeloma is tricky that way and that’s why some people don’t get diagnosed till a fracture like I did. Well, no sense worrying about that now.

Yesterday I made lovely baked potato soup. It came out great. I used the Vitamix to blend and it came out very smooth. Tonight I’m making breakfast for dinner to keep it light. Just scrambled eggs, maybe pancakes and/ or toast. I might do some of Adelle’s chicken sausage as I need to use that up.

 

Monday Blues

It’s raining and I’m not walking and it’s 5:30 am. I haven’t bought the Frogg Toggs yet so I don’t have any rain gear. I guess I’ll get my ass in gear and do that this week as I don’t mind the rain as long as I’m covered up.

It hasn’t been a great week. I had some pain in my side last week and it turned out to be a mild case of diverticulitis. So now I’m stuck on antibiotics which wouldn’t be so bad but there’s 2 and one is one that is NO alcohol(wine for me) as it will give you a violent reaction. So not fun for me as I love my ritual of wine in the evening. Well, maybe change is good.

Then my CBC and CMP came in and they were all fine. Unfortunately, my Kappa light chains went up another 11 points to 55.7 and Lambda went down so that means the ratio went up( not good) to 5. 1.  I’m not freaking out but it’s clearly not a good sign. Treatment is out there again the question would when is my doctor going to think it should start. He still seems to think my numbers too low. They are low and I don’t want to start Velcade soon but time is ticking and I don’t want to have fractures or let my numbers get too high. Granted they are still low as when I started treatment before they were over 1000mg/L. I guess it’s just wait and wait some more.

I did do quite a bit of house tidying this morning. I decided I needed to do something or I was going to go stir crazy. So I swished and swiped the bathroom, tidied my office area, mopped the kitchen floor and washed some of the entryway windows. I plan to go out and put on the gas heater and clean the sun porch.

Well, on that depressing note I’ll close.

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.

Birthday trip

We did it!!

This is our birthdays’ gift… B’s is September 22( the same as Bilbo’s and Frodo’s, ( so lucky) and mine is next week on the 30th…..  we are getting ‘older” ( ha, ha, no really we are now old!!

I had reserved 2 nights at Tahoe at Nevada Beach( our favorite). I wasn’t 100% sure that this was a good idea with Barclay just 4 months post-transplant but it turned out brilliant.

The weather was cool at night but the days were picture perfect fall in Tahoe. Plus the campground was almost all ‘old’er people and not a ton of kids running around or riding bikes. The beach was almost empty as was the beach parking lot.

In a word, it was my idea of perfect.

This was also a big deal as B hasn’t really driven any length since really his diagnosis so also a big accomplishment. Next week we see the transplant doctor and he should be able to tell us more about the BMB results which looked great. No MDS, no leukemia, the part we didn’t get yet was the donor cells amount. So hopefully that’s all good too. UNADJUSTEDNONRAW_thumb_398.jpg

We certainly hope it’s all good.

Today, Barclay has his labs in Auburn instead of UCD med center Sacramento. Then we plan to do a call to AARP to sign him up for supplemental plan F. I’m hoping to get Part D signed up at the same time.  So we may be on the phone for a while.  There is still some billing issues we’re dealing with when the Cobra wasn’t activated. I’ve called twice but it still seems to show we owe that money. I’ll wait to deal with that as I can really only handle one thing at a time.

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This is our sweet tent trailer that we really love and our anniversary present you can see there is the Honda generator. Wow, so quiet and definitely worth it.

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The handsome transplant patient 4 months post-transplant and almost a year since the horrible diagnosis. A new life.  A huge shout out of a” thank you” to his brother, Rodman, for the gift of life. A true gift.

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Here’s the happy camper with morning coffee!!