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Spring is in the air. Although it would look like we’re headed for another drought so that’s not good. The daffodils are up and there are violets in the yard. I like violets as they will spread and pop up in the most unlikely spots.
I finished the living room zone already. Since there’s not a lot to do in there it goes fairly quick.
Yesterday, I potted 4 starter plants and today I have 2 more to do. Mostly pothos and Monstera and
Syngonium podophyllum. I have at least 2 more of these.
I also decided to repurpose a little table my daughter took out of her room to put the plants on since now I have at least 4 more to put somewhere. I’m painting it white so it’ll blend in more.
We’re looking at stove hoods and found one on amazon we like so we’re going to order that. This begins the very minor kitchen remodel. We can’t change the configuration of the kitchen due to walls and doors so we just have to make do with the way it is. I suppose if we had money, a contractor could do it but we don’t so that’s that.
I’m also going to get a new kitchen island in stainless. Basically, the same as we have that’s from Ikea but they don’t carry this one anymore and the one I found ( AMazon)has the shelf straight across whereas the one I have it’s split.
We’re trying to prioritize what we can do and how much we can spend as there is no more ‘extra ‘ money coming in. That SDI was pretty great.:) sad it’s over…..
I’ve been remaining calm and trying to relax over this month as there is alot going on with my health. I went to a park on a beautiful morning to enjoy nature and the fresh air.
Last month I received my Feb monthly blood test results and it was a bit of a shock as my cancer levels continue to rise. My cancer levels are now 50 from between 47-48 in December. I had hoped my cancer levels would drop and then remain low and stable between 0 and 2 with ongoing chemo for a long time.
I’ll soon see my Myeloma Specialist and should find out whether another chemo treatment is available. If the answer is no/not right now, I’ll remain on my current treatment and hope for the best while I wait.
Focused on happy thoughts and positive vibes.
Self-portrait: A beautiful morning in the park
M protein (g/L) (if 0, then no cancer detected)
Jan = 50
Dec = between 47 and 48 (began chemo)
Nov = between 40 and 42
Oct = 29
Late Sept = 21
Early Sept = 16
Aug = 13
July = 6
June = 5
May = between 3 and 4 (post-chemo)
Apr = 3
Mar = between 1 and 2
Feb = 3
Jan 2019 = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27 (started chemo)
Early Oct 2018 = 48
—
I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable.
From December 2019 I’ve been on Darzalex (Dartumumab), an IV chemo with Velcade (Bortezomib), a chemo injection + dexamethasone.
Currently, as I sit down to write, Jim is struggling to balance and walk back into the house.. he is forgetting how to move, how to walk, how to move his feet… I can see his mind trying to analyse things still… over analyse in a detrimental way… Chris and Jim attempted to go for a little walk outside, but Jim has been very disoriented today, well, this week, well, since last week and the week beyond…. his situation deteriorates and accelerates downhill daily, with a few moments of clarity and orientation. Alzheimers is just so cruel and evil… I hate illness and body sabotage… so incredibly unfair on so many levels…
To Be Continued, as Jim (with Chris) is struggling stand up right now…
===============
Yes, I was planning to write about so many things. I always have so many topics I want to share with you. I begin several posts before I post, but I rarely post the posts I begin or write in my head….
Here’s a part of what I was going to write: ===============
On my way to my weekly blood tests this past Sunday, I was feeling so “alone”. NOT lonely, just so alone in all my challenges and battles. I was thinking about the difference between being Alone and Lonely. I am not at all lonely. I have so many wonderful people in my life. Family, Friends, Caregivers, Neighbors, Acquaintances, Medical staff, even Social Media “friends”, etc, surrounding me all the time. I could pick up the phone, and be with anyone, or a number wonderful people in second. I could go places, do things, have all kinds of adventures in a second, (if I only felt well enough!). I am Not Lonely at all and never will be. But the feeling of “aloneness” really hit me the other night. The feeling of being so Alone in all that I am dealing with, confronted with, slammed me in the face as I was driving. I was almost in tears. Tears of recognition. Tears of defeat. Tears of immeasurable sadness about what has happened in my life in the last 10 years, and of recent with Jim.
I pulled into Kaiser for my labs and “pulled myself together” psychologically. I am a master of disguises, always “faking it til I make it”. I don’t want to be “weepy” wherever I go. I have been, but don’t want to be. It’s just not me. I am not afraid of my emotions. Not afraid of people knowing me and my feelings. I just don’t want to be sad. It’s so sweet how I am always greeted personally by the kind, caring check in staff. They know me. I am their “regular Sunday labs gal”. Been doing WEEKLY blood tests since Kyprolis, Darzalex, now Velcade! Wow, since Fall 2015! Just something as “small” as this identity recognition warms my heart and boosts my spirits. See Julie, you really are not Alone in this crazy, continuing cancer battle.
I’m also greeted with recognition and smiles by the Phlebotomy team that knows me too well. We chat about our mutual lives. Sometimes there are others in the lab, thankfully often not, as I try to time it when Sunday night Urgent Care is not busy. Our conversation often includes amazement of my ongoing chemo, treatment, incurable cancer situation. Everyone is always incredulous I am as “ok” as I am, look as “good” as I do, and am as “positive” and “upbeat” as I am. That’s just me. I don’t want to be sad. I don’t want to be weepy. I don’t want to be dragged down by all this illness awfulness. It’s not who I am. My spirits are renewed. Just simple acts of recognition, familiarity, kindness and understanding renew me, and remind me of who I used to be.
I leave the Lab for the Pharmacy just steps away to pick up my Rx for weekly Cytoxan. My phone rings. It’s my son Scott and his fiance Ashley, on the way home from a trip. Crazy timing, as they are Right There, on the freeway, almost passing where I am. Unbelievable timing… or is it. They are right there. I let them know where I am. We’re all shocked at the “coincidence”… at how location-close we all are. Right there, at the Same time! They were thinking about stopping at In n Out. I hadn’t eaten much yet, and was planning to go home eat. They’re Right There. I’m Right There. The timing is incredible… We decide to meet up at In n Out. They’re amazed I’ll go lol. I tell them how sad I had been. How “alone” I had been feeling. The timing was crazy. Meant to Be. How could I not meet up! They’re sad I was so sad. I reassured them it had nothing to do with them being gone. It was all about me. All about the overwhelming sadness of the medical insanity in MY life. They still felt bad. My kids always feel so bad and sad for what we are going through. The timing of this was truly amazing. We met, we ate, we laughed, my spirits again were renewed. Timing… wow…
I am alone in MY journey. I am alone within Myself, about myself. Has nothing to do with others. My life is full of amazing, wonderful, loving, caring people. I have so many, so much in my life. I am so lucky on so many levels! Can you believe this timing?!
That was Sunday.
Monday is Dex Steroid day. My day of fake feeling good. Of not feeling sick or in bone pain. Of things sunshine and renewed spirits. I feel like me again…
The kids and I go out Monday night for my daughter’s boyfriend’s birthday. We laugh a lot. I’m their crazy, steroided, dexified, hilarious mom. We laugh! I’m feeling like me again. Free of pain. Not nauseated. Free of illness. Free of sadness. Free, for a day… Temporarily, this is me again.
The me before illness took over our lives.
I am not Alone. I am not Lonely. I am a Very Lucky Lady!
Things are good this week with 2 doctor appointments down.
B had clinic on Tuesday and I drove him to UCD med center as it was an early appointment so there was traffic. He’s back on prednisone for a rash but it is minor and seems gone now. I sat in the car dealing with the financial fallout from the Cobra. What has happened is this: His group insurance ended as of 7/31 and that’s when we initiated the Cobra thinking at $700 a month that would take care of all the bills.
Ha!!! NOw UHC Cobra is still saying because he was Medicare ELIGIBLE they won’t cover the full costs. WTF????? Well, long story short, after numerous calls we are on the hook for the August appointments. I made payment arrangements while I was waiting for him to finish up at clinic. All his appointments from then on were covered by Medicare. But we still were paying the Cobra till actually just the end of last month( January). Not sure this was necessary but open enrollment hadn’t quite started so even though we could have signed him up with special circumstances, we just left the cobra in place.
All I can say is if you’re ever faced with losing group coverage and have to go on Cobra …DON”T. Overall, the cost factor doesn’t cut it or you need to absolutely clear what the cover. In our case, I just assumed everything was covered.
So then yesterday, I had to drive back down to Mercy cancer center for my appointment. It’s kinda what I thought he would say is yes, it’s going up but too soon to start treatment and to keep thinking of this as smoldering myeloma. So it’s watch and wait. That’s okay and when the time comes and my numbers are going up faster, I’m sure we will move ahead.
Today, I’m going to do some cooking. I’ve made hardboiled eggs and I’m going to make the olive and feta topping again. Plus I ‘going to grill some chicken for lunches and dinner. I think I’ll grill some onions while I’m at it.
I have some house chores to catch up on and then I’m going to hit the gym.
So we’ve had some relatively positive news which is that my paraprotein has gone down ever so slightly which means my consultant is happy to keep me on the current treatment for the time being and not move me to DT Pace which I/ we were dreading!
It doesn’t mean he won’t change his mind, but it’s good news for now and we just have to just keep our fingers crossed that it doesn’t go up again quickly….and in fact that it goes down. The other impact is that my transplant will probably be a bit later than we’d expected….again it’ll all depend on what happens with the figures but it looks likely that it won’t be before the summer now rather than April/May.
That could be really good as it’s a nicer time to recuperate after my 3 weeks in hospital, will mean the kids can get to places in the light and also means we can keep getting work done on the house! We’re desperately trying to do as much as we can this year before the transplant so we can enjoy it after!! We just have to avoid when Rebecca does her Rangers community project in Romania as she doesn’t want to be worrying – sort of hoping we could go for a time just after she gets back in August!! But we’ll see!
Anyway, thought I’d just update the score as so many of you have been in touch and sent best wishes to us all – bear with us – it’s even more of a yo-yo for us than it is for you!!
We walked this morning and it was noticeably warmer @ 46 degrees. I think we’re going to get close to 70′ today and mostly sunny.
A few more books I got at the pet bookstore.
My Culinary Journey was excellent. She actually lives in Provence part of the year and right near Sacramento the other part. I think she said Winters. She moved to France in 1970 so quite the adventurer. I was just starting U of A that year. So some perspective.
The ‘Everyday Greens’ cookbook is one of my favorite and this is a signed copy. Greens is the vegetarian restaurant run by the Buddhist monks from Tassajara and Green Gulch. Back in the day when I was practicing Buddhism, this is the Sanga I belonged too. We’ve been to Greens a number of times and if you’re in San Francisco you should definitely go. The food is delicious and beautiful.
I’m also reading ‘Me Elton John’. Wow, it’s a terrific book and boy did he go thru some drug-crazed years. It’s amazing and even more so what he overcame and is now such a philanthropic person. He gives generously to many causes.
This morning I’m making some Butterscotch Oatmeal cookies. They smell good.
I’ve been doing some embroidery so I picked up a few little books too although it’s not quite what I was looking for. I mostly like doing edging and little spots of color on things like my linen napkins.
Today is a gym day.
This week is Flylady’s bedroom zone if you follow. If you’re new to it. Start by decluttering ANYTHING that doesn’t belong in your bedroom and any excessive furniture. Yes, the treadmill being used to hang clothes on needs to go.
I have only one Heywood dresser and a side table and that’s it besides the bed. The side table I need to hold the pills I take at night. Plus my water glass.
Last night I made falafels with tahini sauce and a delicious recipe that was Castelvetano olives, lemon zest, shallot, and garlic and fresh thyme. You cook the shallot, garlic, and thyme in some olive oil. Then add the olives and lemon zest. Cook for a few minutes then let cool some. Then add a block on feta cubed up. I’ve found the feta from Costco in the brine from Greece is the best.
This is supposed to be served with a grilled rustic bread but I just put it over the brown rice and it was delicious.
Tonight I’m making a quiche of some sort as I have eggs to use and some gruyere cheese as well.
Yesterday, Adina died. She was only 45, diagnosed 5+ years ago. She leaves behind a great husband and 2 teenage daughters that need their mom. She fought like crazy to stay here. Her myeloma refused to allow that. Her story is a very difficult one. When she first fell ill, her doctor did not take her seriously. Sadly, this is very common, especially with women, and I’ve had this happen many times myself. Too many doctors try to blame stress or anxiety for women’s ailments. Her doctor did not run blood tests or do any real testing, to my knowledge, to rule out illnesses. Finally, I cannot remember if she went to the hospital or her doctor, but she told whichever that she was dying and she was not leaving until they found out what was wrong with her. She was right. She was dying. She was in renal failure and had to start dialysis. She was then diagnosed with myeloma. She was, understandably so, furious at her doctor, who just said, “we don’t expect to see myeloma in someone your age.”
For the next 5+ years, Adina fought like hell to stay here for her family and try to keep their family’s farm and finances solvent. But, like the truly amazing person she is, she also found a way to help others and make the world a better place. She started a myeloma support group in her area because there was none for folks like her and others fighting MM. With SO MUCH already on her plate, and while fighting for her own life, she found the time and energy to fill this need and give to others. That’s how this beautiful woman rolled. She always tried to make the world a better place. She jumped in and did what she could.
On Feb 1st, she posted on Facebook that she was stopping treatment. She was out of viable options and the new treatment worked for a very short time and then stopped. She was tired of feeling so sick from the drugs, not getting much help from them, and being stuck in the hospital instead of spending time with her family. These are the final words of that post:
“I wish you all the best, please go out in the world and make a difference, be a good person, live a life worth living.”
Adina did those things, but not nearly as long as she wanted and deserved to. If there is one thing I have seen, in the 13 years that I’ve been immersed in the world of myeloma, it’s that myeloma seems to choose the best people, the most giving people. It’s so damn unfair. Why can’t it land on the selfish jerks of the world? I know it sounds awful to say something like that. But, seeing the most awesome people live with this and be struck down in the prime of their lives is painful and doesn’t make one bit of sense.
Adina, you will never be forgotten. You made a difference.
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.
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.
Someone told me more than once that they know I am serious, by my very first handshake upon meeting me. I do take handshakes serious.
I am glad to hear this is communicated, because often I feel my messages are not clear. Anyway, I was due a bloodwork checkup and a disease percentage check. Honestly, I was half expecting Dr Borrello was going to tell me the cancer was back. I was pleasantly surprised when he said “Well, I can say, You are a lucky woman because you have gone so long not needing treatment.” He reached out a hand and shook it, congratulations. Then we scheduled a full skeletal survey because… we must be safe.
Multiple myeloma is sneaky in my opinion. To be such a big deal, but also possess the ability to sleep in your body and allow you to feel cancer free. It allows you to dream and hope for a future beyond the ten years you estimated you would get because you were so young when it was discovered.
I sat with my almost 18 year old daughter and received that handshake that felt like a high five inside my heart, and the proof to her that I am keeping my promise “Not to die”, and I can subconsciously pressure her to keep her promise she made to me “Not to die”, at least not earlier than Gods appointed time for us.
Life gets better one day at a time, sometimes nothing at all happens, sometimes Everything that Can… will happen, good or bad. I am typing this from my phone, because my computer acts like it was made in the 1990s… in the place my hopeful spirit likes to hang out.
I am happy to say, I am still kicking cancers butt, I was approved for my cannibas card, which I am excited about. This is the only thing I have done, beyond changing my diet and exercise that maintains my remission. It may not help for everyone, but it would be a shame to not try something that can work if you get the opportunity. Regulated use can really make a difference in quality of life minus the fact I have no need for chemo after being diagnosed December 2012…. woot woot I gotta shout some days.
Sorry my last post was so glum, much is happening, I will update soon.
My daughter Alissa and I at a recent College event
that I barely made, due to continually recovering from
being a head cold, respiratory sickie most of Dec and Jan,
along with being a weekly chemo crash sickie.
Finally gave in, and took some “shots” of my fave mint Imodium
and cough suppressant to be able to attend this fun event!
My WBC was 1.7 here!
Yes, I know, I should be wearing a mask… ugh…
Aren’t we cute hippies!
So wonderful to see my colleagues,
but as they say, “you can “never” go back”.
Sadly I feel my beloved career as a college counselor
seems so far away now…
And it’s just so stressful to be in crowds, wondering what
awful viruses and bacterias are being transferred to me…
We’ll see how I do, as who knows the incubation period of all the
cooties floating around during this awful flu season :((
So many bugs are transferred when people think they are well,
but they’re in the “silent, no symptoms” incubation period.
I really need to get a “Back Off”-
“I’m an Immune Compromised Cancer Patient on Chemo” mask!
As no one remembers my weekly chemo, or thinks I’m as sick as I am.
******************
Mondays are always an interesting day for me, with little consistency of how my body will react to steroids and chemos. The one thing I have figured out, is that when my WBCs are super Low, the steroids have a greater impact on how I feel. When my WBCs are a bit Higher, I don’t have the extreme “up”. But then again, that changes all the time too, so basically Mondays are “bi polar”, unpredictable days for me. I often eat like a crazed animal, as everything looks yummy, gotta have it! I still count calories, as I don’t want to be a fat steroid cancer girl. Sometimes I am careful, sometimes, just tossing all my nutrition and calorie rules out the window :)) Today, BBQ sounded great, and in light of my low RBCs, Hemoglobin, Platelets, etc, I decided meat was the menu of the day. I don’t eat much meat in general, as I feel so bad for animal slaughter and factory farming. Actually, I don’t eat much at all on crash days, for days, so I do believe my body sends me signals of what it needs on the days I can eat, so protein and iron it was today!
I also tossed out my “Neutropenic” cautions of don’t eat fresh fruits and veggies, and had a Kale salad with the delish BBQ. If you know of Stonefire in CA, then you know how great their food is. I had BBQ grilled chicken, fire roasted Tri Tip, Kale salad, a bread stick, then couldn’t get enough dark chocolate for dessert. Then I had some mini blueberry muffins, hot chocolate, Licorice herb tea, and as I’m writing this, some mini Graham crackers and more Licorice tea. I could just eat the entire contents of my pantry tonight, but I rein myself in. Hopefully I won’t be up in several hours with regret and then drinking the pretty pink Pepto Bismal lol.
Tuesdays I’ve learned to eat light, as boy oh boy, does the intestinal crash hit me mid to later in the afternoon. Again, when my WBCs are loooowwwww, I have more and “severe” side effects. Nausea, diarrhea, achy body all over, headaches, extreme blah, yucky, etc. Sometimes hits me early, sometimes delayed. When my WBCs are higher, it’s more of a delayed reaction and not as extreme. 2 weeks ago Tuesday Jan 28, when I was just coming out of my awful fever head cold, (but still did chemo on Monday Jan 27), I met my dad at Brent’s deli after my Dr appt. Didn’t really eat heavy- Lox, bagel, blintzes, dill pickles. But OMG did I “die” later, around 12am with EXTREME, sudden, cleansing diarrhea! OMG haven’t had a severe reaction like that in a long time. Like awful, awful… like turn on the faucet for hours and hours. Finally got to bed around 2:30, 3:00am, then still a bit more the next day. Well my WBC was 1.7, so I’ve learned that’s when my body really over reacts to side effects. Low = Caution, it’s gonna be a rough crash. Higher = watch out, you’re sick, or getting sick, and your WBC army is trying to fight for you…
Dec, Jan, Feb, my WBCs, ANC have been jumping all over the place. In the 1’s one week. In the 4’s the next. Then 3’s, then 2’s, then up down, up down, up down. No consistency since being so sick for so long. I have figured out that when I’m getting and fighting a bug, my WBCs jump higher. Like High for me. Fake High lol. Like in the 3’s and 4’s. That’s the low end of “normal” for a “normal” person. I am always ABNORMALLY low regarding my WBCs. So that’s always a red flag for me. My nurses laugh at me, and tell me so many cancer patients would “kill” to have my labs, as my organ stats are always “good”- liver, kidney, creatinine function, all normal ranges. But ugh, those WBC immune cells are just so challenged for me all the time, but I am fortunate they rally for me, and do rise when I’m a sickie. So yes, I’ve been all over the blood lab map Dec, Jan, Feb!! I’m still coughing and hacking a bit, but nothing compared to weeks prior. Thankfully I didn’t fracture a rib or throw my back out, or tweek my neck horribly with all these bugs I’ve had. I did have the awful headaches for weeks and weeks, but that was probably all the congestion in my head, but I really didn’t have the awful, can’t breathe sinus clogging. Crazy how steroids mask symptoms. Who does weekly chemo when sick! I do! Because I am just so scared to NOT do chemo, as my myeloma is so aggressive and is looking for any window of opportunity to take over. Grrrrr…
Well it’s getting late, and the steroids still want to party, but I have to try to force sleep on myself. Plus if my Alz hubby wakes up and doesn’t see me in our room, he’ll try to get up, and that’s a DRAMA I don’t want to deal with…
So in summary, life is great and horrible all at the same time.
We are so lucky, blessed, fortunate in so many ways, yet so cursed in so many ways.
I fight forward everyday for my family and animals and friends. I wonder how I would handle all this if I was a single, alone, person, with no one in my life. Seems like EVERYONE needs me, and I have to fight to stay alive for everyone else. I do fight to stay alive for myself for the principle of it. I JUST CAN’T LET MYELOMA WIN! I’ve come this far, and am just incredulous that I’ve survived 10 years, and have been doing intense chemo for 10 years, so I’ll warrior on, and see what each day, week, month, year brings!
I fight forward for all these goofballs:
For all my Horses
For all my adorable, crazy little rescue doggies
For my family that needs me
For my big rescue doggie Abbie, who is not well herself
For my amazing caregivers
Nathalie and Chris
And for everyone that cares about me :))
Thank you for checking in, reading, and caring about my life as you do!
sad it’s over…..
