So yesterday I went down to the Mercy( Dignity Health) satellite medical center in Rocklin. It was about a 25 minute drive so this is less than 1/2 of going down to C street in Sacramento. It was very nice. A quite small infusion room with 5 chairs. The nurses(2) seemed exceptional and mine was over the top friendly and informative.
So this is round 1.
Shot one of 2.5 milligrams of bortezomib. The nurse said she had quite a few patients on different regimes such as weekly( no breaks), 2x weekly for 2 weeks and then a 2 week break. So I thought that was interesting.
The drive home uneventful and I was back quickly.
When I got home I waited till @ noon to take the dex. I rested a bit and got up around 2 and read some. My daughter made some tortellini for dinner. My eyes do get affected with dex and so we only watched one Bridgerton.
I took an Ativan and was in bed @ 9. I didn’t fall right to sleep but eventually. This morning I could tell it was still a Dexish morning so I’ve done some of my morning resets( swish and swipe), tidy kitchen, and started a IP of yogurt. I did cut our walk short by 1 round as I was just too tired to do another.
My daily chores are done and the FL zone this week is the kitchen. The entry way was only 2 days so I missed that. But, I think I’ll sweep the patios and tidy up the fir boughs.(my daughter already did all this so it’s done!!) I’m going to leave them thru january as it seems wintery. My door wreath is bay laurel so that can stay up too. I also have some nice pinecones we collected up in Tahoe on the bench outside the front door.
One thing I’ve learned with being more minimal is to use natural things for decor or seasonal decorations. It makes it easier for me to not have think about the decorations in bins. I definitely used to keep bins with seasonal stuff but not so much any more. Now I only have my vintage Halloween, and some Easter stuff and Christmas in some Ikea boxes. Works for me.
I used my Staub again for a braised short rib recipe. It cooked beautifully but we ( the meat eaters) were not too into the dish. It was good but not great. It will not go into rotation even though it really is an easy one pot meal. This pot though has cooked everything I’ve done to perfection. If you’re looking for an all around pot this is it. Staub should sponsor me as I cannot say enough good things about this pot. And that’s coming from a die hard fan of Le Creuset.
I am doing a Walmart pickup so that should get us thru till we get to Costco about mid month. I’m planning on trying to use the Instant Pot to make yogurt. It seems easy enough so on the Walmart order I have some whole milk yogurt to use as a starter. We’ll see. I’ll post how it goes.
My rib feels pretty good. Maybe still a little tender where I probably pulled the muscle around the rib. I’ll be sure to mention it to my doctor. He did ask whether I wanted to do PET scans and a bone marrow biopsy to see it there were any hot spots and/or if the myeloma has morphed. I declined since it is what it is regardless. I think if I had more symptoms I might but at this point I’m fairly asymptomatic except for blood work that show the increases.
This week I see the eye doctor for my 6 month macular pucker scan. I’m hoping to not have to get my eyes dilated as they stay dilated for hours. I’m also thinking of getting the surgery when the pandemic is over and things are back to normal so probably a year from now.
I added some more ” things I hope to accomplish” list. :
find 3 new hikes to try
paint the living room and kitchen( this was supposed to be done last year)
find 2 new places to camp( I was thinking either private or maybe just Forest Service campgrounds)
keep up with the prepper pantry but streamline what I stock( and know we will use).
Everyone got some nice things. I got my son a Pendleton National Park wool blanket from Goodwill Seattle. It’s the Glacier one that is white with color stripes. Very nice and a fraction of the cost new. He also got a used copy of Easton Press” A Tale of Two Cities”. B got a new Leatherman knife since a few years ago when he went to board a plane he had is quite expensive Leatherman in his pocket and they took it away. My daughter got 2 pairs of pruning shears, an Easton Press Grimm Fairy tales and some other stuff including these made in Japan Sound Collection plates… I discovered these by accident about 2 years ago at Goodwill when I found a bowl and fell in love with it. They are quite hard to find and the only place apart from Japan ,I guess, is Ebay.
I got a lovely sweater, a Kitchen Aid hand mixer( I asked for this), and some great gifts from my son, artisan flour, and a scone mix.
All in all a really nice and somewhat minimalist Christmas. It could have been scaled back even a little more but in the end I think it was perfect.
I made a NYT recipe called the Big Lasagna.
This is just the first page of the recipe, there are 2 more pages if you’re interested you can google it. It actually was huge and must have weighed 5 pounds. Lasagna is always our Christmas dinner. Not sure quite when this started but I remember when we were first married making lasagna since it was vegetarian.
It really was delicious.
I took all the Christmas stuff down and put away. I start to feel it looks a little cluttered up after 3 weeks of decorations. So now it’s all tidy and things put back in place.
I’m cooking up the scone mix this morning. It’s a ginger cranberry and it was a nice mix. I’m thinking scones are a nice easy thing to bake so maybe I’ll do this more often. This mix was from the Vermont Store but King Arthur has some lovely ones to choose from.
Our walk was lovely at 6:10am this morning. Still dark, but by 7am we’re getting a nice light and the park is all frosty.( well, it’s frosty before that but then we can see it!).
If you follow FL, we’re in the Living room zone. That was one reason I wanted to put Christmas stuff away. I’ll wash the inside windows and dust everything.
Well, this is the week I go to Sacramento to meet with my oncologist. My first question is going to be” when can I get the Covid vaccine? the second will be when do we start treatment.” 😦 Really, I’d rather start than have myeloma cells multiplying and then risking fractures or worse.
Yesterday was my doctor appointment and it went well. I’ll have my 8 week labs around the first week of December, then see him right after Christmas, then start Velcade/Dex in January. He did mention that there is a pill form of Velcade but since that would be a tier 5 drug, I just don’t want to deal with that. So the shot isn’t bad and neither is the drive. ( We got there in 50 minutes yesterday with NO traffic. So it’ll be 3 weeks on one week off. I’ll be ready!!!
I am having lots of anxiety about the election next week, along with the rest of the country.( well, intelligent people who can see Trump for what he is). It’s just a lingering underlying stress as to what’s going to happen. It’s not keeping me awake at night but still, I read the news compulsively for clues. Well, I guess we’ll know soon enough.
We shopped at Trader Joe’s in Roseville after the doctor appt( which was why B came with me). It was pretty packed with people but everyone HAS to wear a mask so it was ok. I loaded up on lots of things. Some prepper stuff like canola spray and tamari, and some just regular food. We were home by 12 noon so not bad at all.
As I mentioned, we adjusted our walk time till 6 so as to try and avoid jerk walker. He’s still there though and just as abrupt but at least walking the other way has made a huge difference. 6 am is nice because by 6:30 it’s predawn and the sky is lightening up. Sunday is daylight savings so I figure we will just walk when we feel ready and see what time that ends up being. I’m guessing the jerk will go by the darkness not the time. One example of him still being a jerk. So the confrontation was about his not using a flashlight, right? So he has been using one. Then this morning I saw him have it on and then as he approached us he turned it off. Uhh…passive aggressive anyone????
Tonight my son is going to make us an Oktoberfest dinner of Bratwurst something( not sure yet exactly what he’s doing) but at least I don’t have to cook.
I have a loaf of rye sourdough baking and it didn’t puff as much as I’d like but it still tastes great.
We are still getting lots of eggs and I’ve been keeping up on using them. I put it out on Nextdoor neighbor but no one answered. I’m guessing with the pandemic when everyone was buying chicks, and now they are all laying eggs. It’s okay, in a few months they will slow down once it gets cold.
I have loved lighting my beeswax candles for dinner time. I have lots of pumpkins on the table and around. We’ve been having a fire every morning too. It’s been about 45 degrees out, so chilly.
Honestly, it is hard at times to be positive about having cancer. I can compartmentalize most of the time and I do. But then when labs come in and you have to face the reality it is hard.
I was diagnosed with Multiple Myeloma in 2005, had the autologous transplant in 2006. I know how lucky I am to even still be here but it doesn’t make it easier. I relapsed in 2010 and actually did great on Revlimid ( aside from it causing severe IBS) for 5 years and then that stopped working. My kappa light chains went up to almost 1100mg/L so pretty high and my ratio was way up at 92mg/L. Velcade or bortezomib is a proteasome inhibitor and worked astonishing well. Within 2 cycles my numbers were almost in the normal range. And that has lasted 4 whole years.
I have no complaints. But the reality is now my numbers are increasing exponentially and I have to deal with it. With my new numbers, I still think it will be January 2021 when I restart Velcade. Since I get my labs every 8 weeks that puts me at the beginning of December, with a doctor visit by the end of the month and then a start date. Velcade means weekly trips to the infusion center. It’s 3 weeks on 1 week off.
It’s depressing but the fact remains I have a cancer that goes in to remission and then re-emerges. It’s never going to disappear. Don’t get me wrong, I am exceedingly fortunate not to be dead from this already, so it’s really just a matter of buck up and deal with it. So many cyber friends with myeloma are long gone with very aggressive myeloma. Mine is always there but so far hasn’t been aggressive.
So here’s the numbers:
Kappa light chains at 382.mg/L up from 239.2mg/L
Lambda light chains at 11.2mg/L up from 10.2mg/L
ratio of the two at 34.11 mg/L up from 23.2
M-protein( SPEP) .4 up from .3
Well, blood doesn’t lie so there it is in black and white. The cancer cells are on the march.
Give me a few days and I’ll be okay with it and be ready to reset. Plus, after thinking about it, I wouldn’t want to start anything till after the holidays so there’s that as well. I’ll see what he thinks when I see him at the end of the month.
Well, I figured another increase. Up to 239.9mg/L from 176. So another almost 70 point increase. Lamba went down to 10.2mg/L so of course, that means the ratio went up. Up to 23.4 mg/L.
The bigger news is now there is finally a monoclonal protein showing:( it’s at .3 I haven’t had a M protein in over 4 years so that is a bit unsettling. Well, as I’ve said, the blood tells the story. Not much I can do about it except plan on the timing of Chemotherapy. I’m guessing when I see him at the end of August he will still say, wait. I’m predicting by November/December will be a good time to start. If you figure about a 70 point increase each 8 weeks, that puts it at 4months apprx.
This will be my 4th relapse( well technically my 3rd, since I counting when I became refractory to Revlimid and started Pomalyst.) so I guess I know the drill.
It was a rainy day and I had to drive to Sacramento for my oncology appt. The drive was slow but not too bad. My appt went well. I’ve had Dr. Laptalo as my medical oncologist since I was diagnosed in 2005. He was a fellow then and then later board certified. He’s a good person and I trust him. Again, it’s really just waiting till my numbers are higher to start anything. That’s ok. He did recommend I have the colonoscopy after the diverticulitis bout. So I will schedule that for January or even February. I had him look at my CT scan with contrast and he said there was nothing unusual. So that’s good.
Then I came up to Rocklin and went to Walmart to exchange the flannel shirt I had picked up by accident in XXL. That is way too big for B. Then home.
Tomorrow I have a gym day and then some errands. I need a candy thermometer to make the peanut brittle and I need to go to the bank.
I am feeling somewhat frustrated with the house and it starts to feel really small this time of year. It’s usually when I start looking at decluttering more or at least moving some things around so there is more space. Winter/rainy days do make things seem closed in. Well, that too will pass.
Dinner is veggies and one of the cheese fondues. It’s not the one I usually buy so I thought I try it tonight.
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.
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”.
I've been married for nearly 15 years to a wonderful husband and I'm a mom to three great kids ages 12, 11 and 9. Oh, and I just happen to have cancer. Multiple Myeloma is a cancer of the blood that is currently incurable but IS considered highly treatable! My goal is to make people laugh, cry or feel a little less alone whether you are a mom, cancer patient or BOTH!