Pain here, Pain there, Pain Everywhere

6.20.20

Hello Everyone :))

Before I update you on what’s going on now, here’s a look back TEN YEARS AGO, as I was prepping for my Stem Cell Transplant at City of Hope. Ah, so Naive was I.

Back then, I didn’t have the awful side effects I do now. Back then, Myeloma’s viciousness and life sentence hadn’t sunk in. Back then I was on an “Adventure” and in full Denial of the Seriousness of my situation. Back then, I was ridiculously Optimistic. Back then, I saw all my medications, appointments, labs, tests, consults, preparations for SCT as Challenges, Adventures and even new social events, as I met so many Amazing people at each appointment. That was just my nature. Julie the eternal Optimist. I genuinely had not fully digested the Seriousness of my Diagnosis. I had never been really sick, and when I was, I recovered “normally”. Back then, just one foot in front of the other, humored by all the fuss, and always expecting a good outcome, nothing less. Back then, I was on 40mg Dex steroids 4 days ON, 4 days off, so I only had one or two lousy days, then, boom, hello 40mg Roids boosting me back up again. Back then, I still looked ok. Always being told “wow Julie, you look so good, you don’t “look” like a cancer patient, you sure don’t look sick!”. Oh what a ride that was…

Back then, I and everyone else in my little and big circles had never heard of Myeloma. Back then, I spoke all the scary words of Cancer, Terminal, Incurable, “how long do you have”, “wow, 70% myeloma”, “High Risk myeloma”, Chemotherapy, Chemo treatments, Stem Cell Transplant, Hospitalization, Side Effects, month long isolation and recovery, etc, etc. Back then, I laughed in the face of my diagnosis and continued to work, albeit a reduced schedule. Back then, I spoke openly and freely about my situation, to the shock of many. Most were more scared about me, than me. The only “real worries” I had, was I didn’t want to have Upper GI sickness. I hate throwing up. I hate the out of control of being upper GI sick. I hate the words “throwing up”, “vomit”… eeekkkkk… If I could avoid that, hey I could handle anything… back then…. yes back then I was so different than I am today.

Here’s a walk down Memory Lane… my post from June 2010-
https://juliesmyelomamoments.blogspot.com/2010/06/

June 2010, my 1st, and only IV Cytoxan treatment
and the only chemo experience where I was (later)
GI sick :((

=========
2020… I am beaten. Beat up on so many levels, I have to be honest, it feels like Myeloma has won. I am beaten by constant pain. Beat up from non stop side effects. Beat up by pain. Beat up from feeling lousy 24 7, except on Dex steroid days. Beat up from the loss of my life, dreams and plans. Beat up from the constant, continual battle being waged on me, and the battle I have to wage, to just exist and stay alive. Beat up from trying to manage pain. Beat up by new fears. Beat up from loss of sleep due to pain. Beat up from wondering what the future will bring. Beat up from all the “What If’s”. Beat up from attempting to still be “me”, then “paying for it” later, with instant pain. Beat up from Illness being my life and Jim’s life. Our life, our illnesses is everyone’s life around us. Beat up faking, trying to be me, and trying to do what I used to do. Beat up with so much responsibility, while feeling so yucky Beat up by wondering where all this going, what tomorrow will bring. Beat up by fearing movement, tweeking something, falling, tripping, moving, trying to enjoy just the little things, then having something always backfire on me, as pain sears through my bones, muscles, nerves, whole body.

Yes, I am beat up friends. Beat up from fighting Myeloma for over 10 years. Yes I take stronger meds now. Strong for me. I used to laugh about children’s strength pain relievers helping me. Children’s chewable Tylenol. Ha! Yes I have graduated to Adult Strength. First 325mg, then 500mg, now 650mg and more often. I have a drawer full of meds. I am reluctant to use them tho. Scared to try things, when I don’t know the side effects or outcome. I tell my kids, I would like to take a muscle relaxant, or meds prescribed to me from before, what’s that mood relaxer, Ativan? I just want relief. I just want to be pain free and have mobility without tweeking something. But I am afraid to try things, as I don’t have “help” here late at night. At this time, I don’t want to do the Opiods. Maybe one day I will “have to”…

I often think that if I take something at night for RELIEF, no one would know if I passed out, tripped, fell, died, etc, as Jim is completely incapable of caring for himself or me. I am not “lonely” at all, but I am sure “alone” after our awesome caregivers and adult kids leave at night. Last night I had my amazing daughter stay later while I showered. While I was in there, I was dizzy, in pain, and every movement hurt. I felt bad having her stay so late. She is happy to do so, but I feel bad. I feel my adult kids should have their own lives, and not have to be daily back up caregivers. I hate being Codependent. I hate not being Independent. But the pain. The limitations. The fears of “what if” when I am here alone… so I decided to take a tiny little dose of Dex steroids to get relief that Tylenol was not giving me. I always start with the lowest dose option to see if that helps. Half, 2mg of the regular 4mg pill. This is off-schedule. My weekly chemo regimen is 7 Dex pills on Mondays with additional IV Dex, for a total of 36mg weekly, along with the Elotuzumab/Emplicity, along with 10mg Revlimid at night. I had taken Tylenol through out the day. Only took the edge off, but the pain was ever increasing… I always have Dex as my Elixir, as my back up plan. Miraculously, I finally felt Relief a few hours later, but I still have pain. Pain in my bones, muscles, head, nerves, etc. But I don’t feel like pounding a hammer to my head…

Yes, I am beaten physically and mentally, but I will forward march. I have to. I have to for everyone that loves me and needs me. Which is a lot of people and animals. And I will forward march, one challenge, one painful event after another, because I am also curious where all this absurdity is going. What will my head, brain, neck MRI show? What will be the treatment recommendations? Radiation? Surgery? More, new, chemo? Where is all this pain coming from? What is this new little tumor on my spine? What is all this excruciating head, neck, muscle, nerve body pain, along with killer headaches? I just want answers. I can handle a lot, if I know what’s going on..

Thanks for reading and listening everyone. Hoping your lives are getting back to some sort of “new normal” or even back to “normal” for you. Hoping you are pain free, and free to be you. Free to live your life dreams and goals. Free to be you, and do that which gives you joy and passion. Move forward always. And like I always tried to do, try to focus on the “glass half full, not half empty”. Just go away awful challenges…

chemo chemo chemo chemo chemo

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Five on Friday

I think I will just abandon Friday for now as nothing we’re doing is very frugal. But five on Friday does highlight that.

  • So we went and did the Costco and Trader Joes trip on Tuesday. We went early and TJ’s was still fairly busy. But we were in and out at a mere $167. Some snacks, tofu, frozen veggies, salad stuff, tea, wine, and who know what else. Costco was busy but again we made it thru pretty easily although by the time we left it was getting packed. I had one woman run in front of me almost knock me over( not really, just imagining) to get to the Clorox wipes. Geez, lady.  My son wanted some Knobb Creek whiskey? so that was expensive. But it was a giant bottle. Anyway, we got out of there under $200 with $100 being the whiskey, his Captain Morgan Rum, and B’s Sierra Pale ale. All of which I do not imbibe.
  • Our windows finally arrived so we went and got those from Home Depot.
  • We were back at Home Depot to get wood for the windows and insulation. There is some dry rot that needs to be fixed. More $$$.
  • The weather is heating up to 100 degrees + this week. Not my favorite thing.
  • I made three new recipes this week. Organic Turkey meatballs. They came out pretty darn good. Then I made on the BBQ a seasoned Tri-Tip from Costco I had bought back in March. I watched a YOu Tube to see how it was done and I actually followed the directions and it came out great. Then I had bought some fresh Ahi Tuna at Costco. It was pricey but again I watched YouTube and got the timing down as it’s a quick sear. It came out really good and there was enough for all 3 of us meat-eaters to have lunch the next day. So $17. for 2 meals for 3 people. It’s not beans and rice but we eat that a lot of the time anyway.
  • My daughter bought a ceiling fan for her room and the wiring is too sold to reuse so B will need to go get the right wiring for that too. This old house was really not built very well and then when we had the wiring redone when we moved in the guy who did it, did the worst job possible. He totally screwed what circuits do what and it’s really a mess but to try and prefix that would just be too expensive. So we’ll do what we can.

California along with many other states is seeing an increase in COVID -19 cases. Honestly, this whole thing with people NOT wearing masks is getting out of hand. If it saves lives and keeps the virus from spreading why would you think it’s political. It’s science, folks. Plain and simple facts of how a virus spreads.

Now we’ve got idiot in chief, planning this rally tomorrow with his idiot, science deniers, all together. Good grief, Charlie Brown.

Yesterday I helped save a dog

Yesterday morning I received a whatsapp text from one of my neighbors who had spotted a small, terrified dog on the other side of the tiny river at the bottom of our hill. She took a photo of it and asked if it belonged to anyone we knew. Wait, before going on, I should note that, years ago, my neighbors and I created a whatsapp group that enables us to get in touch quickly should anything happen or if anyone needs anything or whatnot. This group is super useful at times, as it was yesterday, as it turns out…

Some of my neighbors immediately mobilized to help this little dog. They didn’t wait for the municipal police to arrive but got a ladder, lowered it down into the tiny river, really no more than a stream, and carried the dog over to the other side, to safety.

I was still at home when all this happened. But as soon as I got my neighbor’s message and photo, I remembered something I’d seen earlier that morning on Facebook, a desperate appeal posted by a woman whose dog had run off the day before, with her leash on. I took another look at the photo on Facebook and, yes, I was sure it was the same dog.

So I texted my neighbor to tell the policewomen, who had just arrived, to call the FB woman’s cellphone. I then went down the hill to see if I could help. The poor little dog was still terrified, so terrified that she had refused to eat anything, even though she must have been starving. So we (a bunch of concerned neighbors and two lovely municipal policewomen) just stood around, keeping our social distance and wearing our surgical masks, of course, until the dog’s happy owner arrived. All of a sudden, the terrified, motionless little dog became the happiest dog in the world…dancing around and licking her owner, as you can see in this happy photo I took (cutting off the woman’s head, sorry!, for privacy reasons)…

And to think that if I hadn’t seen and remembered the appeal on Facebook, the policewomen would have had no choice but to take that scared little dog over to the municipal kennel, and it might have taken days for them to track down her owner…

I’m soooo glad that didn’t happen.

Anyway, all’s well that ends well. I helped save a dog yesterday, and it made me feel like a goddess for the rest of the day. 😉

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Myeloma 101

Can I take this for granted?
Sex crime 1984 – Eurythmics

… KFLC = 101 …

Another teleconsultation with the doctor. Hospital appointments by phone are vastly preferable, as long as there’s nothing much to discuss. I hope this is a change that we can retain long after covid.

Roon 101, Rachel Whiteread (2003)
A cast of a now-destroyed room at Broadcasting House,
where Orwell once worked, and which supposedly
inspired the idea of Room 101 in the novel 1984.

My light chains are down again. A light chain score of 100 would have been my most optimistic aspiration for the outcome of the transplant. Instead, at Day +100 the results were pretty poor, and I was warned to expect to be back in treatment within months. But since then, my myeloma has unexpectedly retreated: KFLC = 250 in December; 160 in March; 130 at the end of April; 101 on 8th June. In some ways this response is even better coming after a delay, as it’s still on a downward trend. I don’t want to jinx myself by imagining next time’s score… but any further drop would compare with the absolute best response I’ve ever had.

I didn’t waste either of our time on the phone asking why it’s happening, or whether it will continue. I know that no-one knows. Still, I can approximate some rough prognostics. I might have a few years space, rather than just a few months. Of course, there’s no certainty – it could all change next week. Still, for now I’m pretty pleased with myself. Forgive me if I’m not overly sympathetic to anyone else’s lockdown blues.

Two nerdy appendices:

1. Why would myeloma levels drop after a delay?

myeloma cells are a type of B cell.
B cells normally produce antibodies;
and light chains are a component of antibodies

I don’t think there’s a definitive answer to that – certainly not one my doctors have offered to me. My assumption is that it’s to do with the hierarchy of cells. We know myeloma manifests in B cells, and also that it must exist in the progenitors that produce B cells. I don’t know if we know exactly how far up the hierarchy of stem cells it goes. I’d imagine it must go quite far up – that would explain why mm is so hard to cure. My assumption is that maybe the transplant has done more damage further up the cell lineage, so it is taking time for the response to work through to light chains – which are a downstream measure. If a population of B cells survived the transplant, but populations further “up” the hierarchy were more affected, then the observed effect “down” at light chain level would be that the reduction is delayed, as myeloma B cells are not replaced.

2. Why am I able to hope for relatively long time before my myeloma rears back up?
Some myelomas are faster than others. The prof told me, long ago, that I should be glad to have slow-to-go-down myeloma, as it is probably also slow-to-come-up. This has seemed to hold true. The key measure – I think – is beta 2 microglobulin level (β2-m or B2M). Higher β2-m indicates faster likelihood of relapse (and worse survival). Mine has always been low, and that’s a positive prognostic indicator (it’s the basis for staging the disease, which is why mine is always “stage 1” despite all the grief). I have plenty of negative prognostics too: the genetics of my myeloma are high risk (del17p); I get problematic levels of bone damage; it’s proved stubborn to treat; and I’ve got through a lot of lines of treatment… But despite all that, it’s probably going to continue to be slow. And slow, when it’s in retreat, is a very good thing!

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Cancer Anniversary

I’m pretty sure everyone who has been diagnosed with cancer remembers the day if not the hour they heard the news that they had cancer.

Mine was June 15, 2005.

That spring I had gone to a sports doctor to find out about getting Kyphoplasty for my back which still was bothering me. He ordered an MRI and the rest was history. Although it took almost 3 months to get to that place since I needed to have a bone biopsy where the plasmacytoma was which was T -10.

It took quite a while to get the appointment since it was a neurosurgeon that had to do it. And it was truly horrible. He couldn’t get the needle in so he had to use some sort of hammer to pound it in. Not pleasant although it didn’t hurt it was just very weird. I was not under general anesthesia just sedated.  Then after that, it still took 10 days to get the results.

I was standing in the driveway when the phone call came in. I mean at that point I knew I had cancer just not exactly what. After that, I was referred to Sutter Oncology in Sacramento. Within 2 weeks ( actually 4th of July week, I started 17 rounds of radiation.  Then after that chemo for 6 months. Then in the spring of 2006, I had my SCT.

So it’s always kinda bittersweet.  I’m grateful to modern medicine for giving me a second chance. I’ve lived to see my son and daughter graduate college.

Now I’m facing another relapse. It’s okay, I’m still here and will continue to survive until it’s time.

Catching up

We got the tree quote and it came in at a good price. Plus we’re adding in having the very large oak that hangs over the barn trimmed. That will cost $1,000 but partly that’s because he needs to bring in his boon. I’m good with the cost and it’ll be a relief for the big tree to go. We still have the 2 other leaning Ponderosas and the one that leans toward our neighbors is a concern as the soil there is much softer as it is downhill. But I just cannot deal with that right now.  If it gets worse, then we will need to do something.

I had an exhausting trip to Costco but I got almost everything I wanted/needed. Of course, the next day I realized I hadn’t used the coupon that was tucked quite nicely in my wallet and I didn’t see when I went to pay. Oh well, next week maybe. Costco seemed to have most everything except no liquid hand soap or Clorox wipes. I have plenty of regular CLorax that I can mix with water if I need to make up a disinfectant.  The hordes were after toilet paper that apparently you have to make a beeline for the minute you enter the store and the meat counters were crammed with people trying to get stuff. I didn’t need any meat at all so I avoided it. I suppose I could have bought something as back up but I think with what I have, we’re good.

B’s biopsy came back great. No blasts, no MRD disease, no sign of MDS so that is really a gift. Hopefully, this GVHD will get resolved with the new drug. But since it is so expensive and they are( well, the hospital aid fund) paying for it, that it will do the job and then he can get off it.

I’m planning on driving down to see my doctor at the cancer center instead of doing a video chat. I just want to touch base with him and get his impression of my light chains going up so much. It’s not a good trend and I really would rather start Velcade than risk fractures or other horrible things. There’s no guarantee about anything but at least it’s the logical thing to do. I really hate the thought of dealing with dex and pretty much losing 2 days a week but at some point that will be the reality.  I can tell though, my energy shifting and I’m more tired and less energetic.

I also have my delayed dentist appt at the end of the month to replace a crown. Not looking forward to that.

Such strange weather we’re having. It’s hot then cool, then hot again. Today it’s quite cool and we even have a twinkly fire going just to warm up the house. Weird.

http://magnonsmeanderings.blogspot.com/2020/06/j-k-rowling.html 

I was reading this guys post as he’s on someone’s blog list that I read( I read lots of British blogs), but he was commenting on JK Rowlings’ comment about transwomen and I really flipped at what he was saying that he agreed with her that whatever sex you’re born that’s what you are. Really? How narrow-minded. Trans women are women and trans men are men. Period. He also said he had never read Harry Potter or seen the movies and I thought how weird he’s got this appreciation for JK R and hasn’t even read her stuff but when she goes off the rails about trans women he’s all for it. What astonished me is his comments were all agreeing. Well, I commented he needed to learn about transgender people and that it had nothing to do with ” the clothes” they wear. ( He was saying they can dress like a woman but they’re not real women). Anyway, my comment posted, and then, just like that, he took mine down and the other person who also tried to clue him in.

Go check it out.

 

Incurable, Incurable, Incurable Forever and Ever and Ever

6.10,11.2020

Hello Friends,

Where to begin… I’m so beat up…
I don’t want to always post poor me syndrome news all the time, but sadly that’s the true reality of my life…

I hurt all over
Every time I move, I pull a muscle or tweek a bone
Or crack a bone, who knows
I hurt all over
I hurt physically
I hurt mentally
I hurt inside and out
I hurt because Myeloma is eating me up from the inside out
I hurt because I still try to be me, and do “regular” things, when I shouldn’t
I hurt because I am reminded of my lost dreams and goals

Still, now matter how much time has passed, how long I have been fighting Myeloma, I still cannot comprehend and accept what has happened to me… I understand intellectually, I know the medical facts, but I just cannot accept that Myeloma is killing me slowly, one day at time, and I don’t have the options I used to have. I used to have all kinds of options. I specialized in options. I created options. I worked hard for options. I coached everyone on their options. But my options have been stolen from me.

My life status hits me all the time, but now with the change to Elotuzumab-Emplicity, and back to Revlimid, with the resulting side effects, denied realities hit me daily. I am so sore. My head constantly hurts. My neck hurts, my back hurts, my legs hurts. It hurts to sit. It hurts to sleep. I can never fully relax or feel good. I’m dizzy all the time. I live half my life in the bathroom. I think I have new tumor on my spine, or maybe an old one that is now presenting externally. I felt this one when my little doggie Jack sat behind me in a chair, and leaned against me, and wow, I nearly jumped out of my skin.

I want so badly to be me. The me that did anything, went anywhere, worked there, worked here, did chores, did everything around our ranch. Just did, and didn’t think twice about hurting myself, because I was strong, I rarely got hurt. Seems like any time I do anything now, I tweek something, and I’m “punished” for my try, for days. I reach up, I lean over, I do any “normal” activity, I sneeze, I cough, I live…. and boom, something is tweeked. I hate pain. I hate suffering. I can handle this dang cancer sentence if I can feel ok. But pain. Pain is so painful. I dislike taking pain meds. But I have to take pain meds. My head hurts as I type right now. A deep pain in my R side head where this crazy “mass” is. My neck hurts, my back hurts, my toes are numb. But yes, I know it could be worse….

My Dr called me yesterday, or the other day and wants to expand the MRI I am due to take, have been supposed to take prior to the Virus. The scan will be my Brain, my Head, my Skull, my Neck, my “Cervical Spine”, etc etc. Yes, without and with contrast. I’m on the phone scheduling my appointment, asking questions about the Gadolinium contrast dye, and Suddenly… cleanse time. I never talk on the phone in the bathroom, but I didn’t have a choice this time. Lovely!

I don’t have cramps, and often no warning. Just a sudden “gotta go now”! This is another reason my life is so edited. How can I do anything, if my lower GI is always out to sabotage me. And this is Thursday after Monday’s chemo. 1,2,3,4 days later. Yes, I barely have 2 or 3 ok days each week. And no, I don’t want to take Imodium all the time, as my body needs to cleanse out from Monday’s treatment. Cleanse out the chemicals, the meds, the dead cancer cells, etc.

I’m so sad. So sad about what happened to my life, half way through my life. Some days I think about what it would be like to just stop this madness. Then I quickly stuff those feelings. I live for everyone else, not me now. I am doing all I do for everyone else. I don’t have that feeling of personal reward any more. My life is completely selfless now. I am treating and staying alive for those that love me and need me, human and animal. I hurt, inside and out, but I can’t give up or give in. I just can’t. Not yet…

I really feel the ravages of 10 and half years of Myeloma chemo treatments. I feel the toll the meds and the cancer itself, has taken on my body. I feel the tumors and lesions in my body. I feel like I don’t own my body anymore. Myeloma owns me. I wish I could just see inside and see how much Myeloma has taken over. I will see some on the MRI to come. But I “feel” the mass in my head. I feel how it is pushing on things inside my head. Headaches and head pain non stop. It’s not a “regular” headache. It’s different. It hurts. I feel pressure. Bones, nerves, muscles hurt too. Everything hurts. Yes, I am kinda scared…

So I am not sure if the Elotuz Emplicity is causing all the pain and muscle weakness. Maybe it’s the combination of oral and IV Dex steroids, as I take 28mg in pill form before my Monday IV infusion, and then along with the infusion, they give me another 8mg via IV. Who knows. I didn’t have this pain early on with the Revlimid. Maybe the pain is good news and means the meds are attacking the myeloma!!!

So in just 2 weeks, 
my IGA did come down a bit.
I am very fortunate that my body organ stats (ALT, AST, Bilirubin, Creatinine, Calcium, etc) still continue to be in the “normal” range. My CBCs though always are subnormal. WBC at last labs were 2.0! Reds low too. Platelets and Hemoglobin, just below normal. Chemo hasn’t been cancelled in years, so my Dr and Pharma team deem me “ok” for treatment. So crazy, as these are really strong meds. How can my body handle all these chemicals for so long. Well, “handle” is relative, as who really knows what’s going on in my bod, as the way I’ve felt lately… ugh… something is certainly up… But, as frustrated and sad as I am, I am also truly grateful and amazed I’m still here, and I always manage to get my head back together, even when I am having a “pity party”. 
Crazy, I still try to do a lot, too much, around our property, and I suffer the consequences, but there’s too much history and too many years of TLC invested here, to give up yet… Here’s a few cute pics from the last week or so.

First tomatoes of the season!
So many beautiful roses that Jim planted years ago
Mr Tortoise enjoying some salad
How dumb is this! Thought I’d try weed whacking
but wasn’t prepared for the power of the tool. 
Look at me in sandals LOL.
The sticker on me was from being screened at Kaiser.
I think this was after chemo, so I was on steroids
and thought I could be who I used to be :))
Sweet ladybug 
Jim’s Hibiscus from Hawaii
Well friends, so much more to share, but I’m beat up on so many levels. It takes me longer to write and post now, as I have so many “interruptions”, with everyone and everything needing me, as well as all my side effect distractions. Hope you are doing well, feeling well, and finding joy every day within all the challenges always challenging us. 
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the week ahead…

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This is Rose Campion that has spread all over our hill.

We have a few things lined up for this week.

Tomorrow we are having our septic being pumped.  I know very exciting. But really, our septic tank is under the 1200 required by law but is grandfathered in because it was put in a long time ago. Actually, we’re not sure when it was put in since the old man who lived here didn’t get a permit at least that we could find in county records. So about 5 years ago when the septic was overly full and we didn’t know it until the toilet wasn’t flushing down and we knew was wrong. So now we’re on a 2-year schedule. Once he opens and pumps we’ll know if we could’ve gone 3 years. I know, I know, so exciting and TMI.

Then I’m going to brave Costco since I want to use our rebate. I’m not too worried as Costco requires everyone to wear a mask so I’m good with that. I have a big list of things to get( again) but some are still prepper pantry stuff. For instance, I’d like to get a case of chili and some more marinara sauce. Plus I need washcloths and the 24 pack of white hotel washcloths are really the best for the money.

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here’s my nifty food vacuum sealer which I LOVE!!!

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So cool.

 

Later in the week, we are going to drive up to Tahoe to go to the cannabis store so B can get some stuff. His plants are coming along but it’s a way off to harvest. Plus the ride will be nice. I’m thinking of bringing some coffee in our mugs and maybe sandwiches. The beach area in Kings Beach is quite lovely but I’m not sure if there will be lots of people or if it’s still closed.  So a nice day trip.

The weather is quite nice this week. No really hot days.

We are also going to call the tree guy because the giant tree is now leaning MORE!! At first, I thought I was just imagining it but the top is no longer straight up. This is a huge tree and is aiming straight at the barn.  We have the money in our emergency fund but now there is no extra money coming in so whatever we take out won’t get replenished. Once it’s gone, it’s gone. But I think, except for the giant oak near the barn, this would be the last tree for a while unless something else happens. We have 2 other huge Ponderosas that are leaning but they are leaning away from our house. Unfortunately one is leaning towards our neighbor’s house which is kinda scary.

This week is the kitchen zone if you follow Flylady and mine is done already. I just need to mop the floor later.

We are also planning a trip to Home Depot for wood. I’m conflicted about buying from Home Depot since the owner is a huge TRump supporter but the closest Lowes( liberal) is down by Costco. So for our old van a bit risky. ( The van is the only car that can hold wood on the roof and inside when we take the  seats out). So, anyway, it’s a conflict for me.  We are planning to get some fence posts so we can start the fence behind the barn to block out those neighbors.

That’s about it.

I’m so glad the protests are making such a difference and maybe we will see some real change. It is still so sad it has taken so many black lives though to get to this point.

 

 

Friday things

well, not good news on my labs:(

My kappa light chains went up to 176mg/L so a 66 point increase.

Lambda only to 13. mg/L ( normal as I am not Lambda myeloma)

ratio up to 13.44 so a 4 point increase.

Not happy but what can you do. I will see my doctor at the end of June. Not sure if I’ll do the video conference or just go down to Sac. Probably I’ll go down. I mean he isn’t going to start treatment yet anyway, but I’d like to check in physically.

We’re still looking at when I hit 500 mg/L so that maybe January. Or if things speed up sooner. You can’t really tell how it will go except it won’t go down.

I won’t lie that it doesn’t upset me but since this month is my 15 year since diagnosis( I’ll write about that later), you do get somewhat hardened to the fact that remission isn’t forever.

Other matters, B had his BMbiopsy Wednesday and was pretty loopy from the drugs but he said it went well( if enduring one of the most painful procedures you can go thru, can be ok).

I haven’t done any grocery shopping since the Costco Instacart last week. But I will go tomorrow as I need salad stuff and milk. I’d like to get to Trader Joes maybe next week.  I guess it all depends.

We’re in for a cool down here in Northern Ca. It’s been hot but not 100 degrees hot, just 95 degrees hot.

I read in the WP another Confederate statue was taken down. It was some Admiral. They did it either at night or early morning and it was whisked away. Good Riddance.  I also read that Lafayette Park where the peaceful protesters were attacked by the police used to be a slave market. One of the biggest. maybe Trump should read( ha ha ha) some history about the cruelty of selling black people.

That’s all I’ve got.

Quercetin has anti-myeloma activity

A study from 2016 came to my attention today, thanks to a member of one of the MM Facebook groups to which I belong.

This study shows that quercetin works well both alone AND in combination with dexamethasone. Let’s not forget that it’s a proteasome inhibitor (like curcumin and, in the conventional world, Velcade).

Here’s the direct link to the study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5216736/?fbclid=IwAR2Nk3FwZ3b8MfAqKUNOz1YXfQ6PU2lcQzAN-eGSMWvVBO7dTD9waNpxXn4 

I have to admit that I haven’t taken any quercetin in years, but it looks as though I’ll be putting it back on my “menu” now. For many reasons, not just because of its anti-myeloma activity…

Quercetin is good for a bunch of other things. For instance, it may reduce inflammation, blood pressure, and blood sugar, as well as protect against degenerative brain diseases. And the best thing is that it can be found in many of the foods we eat every day, including (red) apples, onions, cherries, broccoli, and so on. But of course it’s easier to get it in a capsule format…easier, that is, than eating a truckload of red apples every day. 😉 

A bunch of years ago, when I did some research on quercetin, I wrote that one shouldn’t take more than 1.5 grams a day, so please be careful with dosage. Do a search of my blog for more information…

Anyway…good stuff!

Stay safe, everyone!