Just Too Much Going On

5.30.20

Hello Friends….

Not the post I was going to post…
Just too much going on in my little world and the big world…

So in short, I had a really rough week from this week’s chemo. Since I am on so many meds, I can never tell which is causing what.

Early on treatment mornings, I take Dex steroid pills (7 x 4mg = 28mg) before I leave for the chemo lab. Then at the chemo lab, I’m dosed up with more IV steroids @8mg for a total of 36mg. Interesting amount. For years I have done 40mg as 10 pills.

Next they give me 2 Tylenol pills, @ 650mg,
Pepcid @ 20mg via IV,
A slow drip bag of Sodium Chloride hydration drips through out the infusion,
And thennnnnn…. a lovely IV push of 50mg of Benadryl.
Yummmyyyyy!!!!!

Many would not “enjoy” this medication ride as I do, but honestly, with everything I am going thru at home with my Alzheimer’s hubby, sad to say… this is like a “spa escape” for me. The steroids quiet all the bone pain, headaches, and random body aches and pains, and gives me an amazing energy boost. Honestly, I just feel good all over. Sometimes a little buzzed, but all depends on how low my CBC levels are. Then when the Benadryl hits, I get all woozy and cruisy. You know that calm, serene feeling floating on a boat. Ah, just so lovely! How do you spell RELAX! Yep, it’s just so warm and fuzzy and woozy without the boozy, lol. I know many would not agree with me, and absolutely do not like this feeling, but since I never did drugs or booze, I enjoy this medical relaxation. Groovy woozy :))

All these meds circulate and do their thing for about 40, 45 minutes, before they start the Elotuzumab-Emplicity IV. There are various drip speeds and time protocols, but I always ask my nurses to slo-mo everything, so I don’t have a strong reaction. Plus, and you’ll laugh at this, I just want to spend as much time relaxing there as I possibly can. How funny and how sad is that!

I only have a slight stuffy throat reaction to the Elotuz, but really nothing at all during the infusion. I then take Revlimid pills nightly for 21 days.

But then………. like clockwork.. about 36 hours later, all the “good” side effects begin wearing off, and rather quickly, the YUCKY begins… and it’s all down hill from there for a few days. This week because of the Memorial Day Holiday, my infusion was on Tuesday, so late on Wed the Yuck began and really revved up on Thursday and into Friday. I was extremely weak, fatigued, had lovely diarrhea off and on late Wed, into all day Thurs, and into Fri. Ugh… so exhausting. I was so fatigued and tired, I actually almost fell asleep on the pottie several times.

So way back in the day, when I was on Revlimid, I had crazy unpredictable diarrhea, well actually it became predictable. I have some pretty funny blog posts about it, mostly during 2013, 2014, 2015. So here we go again with that, and the fatigue. Oh the awful, exhausting fatigue from daily Revlimid.

And I am just trying to do so much, too much, each day, just maintaining our household, ranch, plants, animals, people, laundry, bills, cleaning, fixing, repairing, insurance, ordering supplies, being organizer, supervisor, navigator and “boss lady” to everyone and everything. Thursday, I just had to give up, and give in, as I could barely stay awake. And I was so dizzy too. I’m not a napper, but I eventually just collapsed on the couch.

This coming week I’m supposed to do the MRI “without and with” the scary Gadolinium contrast. Will I do it? Not sure. Am I worried about how myeloma is raging inside of me, Yes. Do I feel “weird things” in my head and body where the tumors, masses, lesions are… Yes. Do I want to Really Know What’s Going On? Hmmmm, not sure. And I always wanted to know it all, always wanted to know all the details… but now… maybe “ignorance is bliss” in this case. Just too much on my plate right now. Wasn’t supposed to be like this. We weren’t both supposed to be so sick, and at the same time. Just such a tragedy. So much is a tragedy in this life. Didn’t used to be so challenging. Why, body, why did you, are you sabotaging me so much. Sabotaging our lives. Lives we worked so hard for, so carefully. 10 and a half years is a long time to be battling cancer, ingesting chemo non stop. I’m amazed I’m as “well” as I am for all I’ve been through. Grateful yes. Exhausted yes. Answers coming up next blog that I probably don’t want to hear, or deal with…

Thank you for reading and caring, and I hope your life is simpler, happier, and less challenging. But in the Big Picture of Things… in the Big Giant Picture of Things… I’m ok…

Hello Elotuzumab and My Ol Friend Revlimid

5.20.20
Hello Friends-

So much to share, and of course today is Crash Day from Monday’s New Treatment Regimen, so I’m feeling new and different side effects, ugh… Also just as I was beginning this post, I received new (shocking) lab results from Monday’s pre-infusion blood draw. Didn’t know they were running my IGA, Beta2, along with the basic CBCs, etc, prior to my new treatment infusion, but glad they did as a baseline…  Thank you for checking in and caring as you do!

Ok, here we go with the new treatment story:

Hello my new Myeloma killer- Elotuzumab!

Hello new Infusion friend to pummel Myeloma

Hello again, my ol friend Revlimid who originally saved my life
after my December 30, 2009 IGA Lambda Myeloma diagnosis.
Was on Revlimid 2010 before my July 2010 SCT,
Then low dose maintenance 2011, 2012
Took a break summer 2012 to summer 2013,
Then back on 2013, 2014, early 2015
Until I became “Refractory” to it, and switched
to Kyprolis…

So basically my Myeloma is trying to rage again. I am such an “under reactor” and naive optimist, and always think things will just magically be ok, or that my myeloma diagnosis was a mistake. Until I get slapped in the face with reality in the form of lab results. Well I’ve received several wake up calls in the last week, along with side effects that just won’t go away. All these I have been denying away for quite some time now. 
I had a CT scan back in January, and it was noted that I have a new “mass” in my Right side skull. It measures 36 x 37mm. I think I even posted about it then, but with my husband’s complicated Alzheimer’s situation, and then the rise of Corona Covid, I ignored my news and hoped it was all wrong, or again, would just magically resolve itself. Well, as my headaches came and went with varying degrees of intensity, I just couldn’t deny something was up in my head. I had intense headaches back in late 2019, early 2020, but associated it with the crazy “head colds” I had on and off in Dec, Jan, Feb. I even had a CD disc of the CT, but I can’t make heads or tails of the data, and it all looks like outer space meteors and aliens to me. It wasn’t until I met with my Dr last Thursday, and she was able to locate the written report and print it out for me, that the reality of this monster growing in my skull, hit me. And it’s continued to hit more and more each day, along with the increase in IGA, Beta2 and M Protein levels. I can’t deny my status anymore, and I can’t just “hope” it will all be better, and disappear… Here are my realities and wake up calls: 
Wow, a 500 point jump in just 10 days!

Up up up…

So Monday was the first of my new treatment triplet of Elotuzumab/Emplicity, 28mg of Dex steroid pills at home, along with another boost of 8mg of Dex steroids via IV with the Elotuz infusion, along with 50mg of Benadryl, along with 2 pills of Tylenol, I think a total of 500mg, and some Pepcid. Then I take the 10mg Revlimid pills daily (at night) for 21 days, just like years ago. Basically all went ok with the first infusion. I did have a slight stuffy throat reaction very briefly, but we slowed the flow of the infusion, and all was ok. As I have posted before, I love the up up up buzz I get from the Dex steroids, along with the relaxing sleepiness of 50mg of IV Benadryl, along with the time I am at the chemo lab “just relaxing”, no one needing me,… so treatment days for me, are actually rather pleasant lol. But I know the crash is coming, so I do mentally prepare for that. Late Tues, into Wed is a struggle, but by mid Thursday, I begin to feel a lot better. I’m very fortunate I respond well to steroids, and don’t have the horrible reaction many do. Well, some weeks I do. Some weeks it’s harder on my stomach than others. I have associated that the lower my WBC, the less dramatic UP I have. 
Here we go
back to IV infusions
Lucky me, room with a lovely view
Anyway, I have scheduled the recommended MRI for early June, to further look at the monster growing in my head. I am still uncomfortable with the Gadolinium contrast used for the scan, but I guess I will just have to take my chances, and hope I don’t have some crazy allergic or kidney reaction. 
Please let me know if any of you reading this have had a negative experience with the Gadolinium contrast dye with a MRI… Ugh, I just don’t want to deal with another challenge… 
I’m just so sad Myeloma has consumed the last ten and a half years of my life, and the reality is, will consume the rest of my life, just trying to stay alive and deal with all the side effects and body deterioration. A mass in my skull, head is kinda scary. I’ve been allowing myself to think more about this reality. Radiation to the head, brain is a bit scary… Don’t want to lose any more brains than I already have…
Hoping this crazy life isn’t too crazy for you, during these crazy crazy times! Thank you for checking in and caring about my story as you do. I appreciate all your comments, and you sharing your story here with me and everyone else.

Jack and Nala
2 of our “support staff” :))

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What Happened to my Life

5.10.20

Hello May

(I’m, writing this several days before posting, so not sure I will even post these thoughts…
Ok I will, as no-filter is my middle name :)

I shouldn’t whine and complain, but I’m just so sad…
I have so much to be grateful for, on so many levels, compared to so many, especially in these crazy Pandemic times, but I lost my life and future dreams long before CoronaVirus changed the world.

I look outside my window and see such beauty 

Beauty Jim and I created over 38 amazing years
Beauty we were supposed to enjoy, not be challenged by
I look outside and see our past, our current, and wonder our future
I see Blue skies, green trees, green lawn, happy plants and colorful flowers
His roses, so loved and cared for, now “my” roses needing “my” care
So much upkeep to keep everything beautiful, alive, thriving, clean

I look outside and see my horses hanging out in the sun, swishing flies
I see my horses there, just there, and I remember the life we used to have
I see my horses out there, and remember the times I could “just go out there”, just ride, just hang out with them, hang with the kids and adult friends, minus medical challenges
I look outside and see decades of TLC invested in our ranch
I look outside and see how much there is to appreciate and enjoy
I look outside and realize how much I cannot do any more
I look outside and realize how limited I am
I am just so depleted, so exhausted mentally and physically
I realize how much Myeloma has limited my life
Limited my ability to do and enjoy as I used to, as I always envisioned I could and would

I look outside and know I must continue on for the humans and animals that count on me, rely on me for Everything…
I know how much Myeloma (and Alzheimer’s) has changed me now
I’m not the girl that started writing this blog in 2010

Physically, my head hurts
The base of my neck hurts
Headaches are non stop
When I sleep, I feel like my head is made of cement, and I am sleeping on bricks
I dislike taking pain meds as I’ve always tried to work thru pain and I worry about the additional impact on my vital organs
But I’ve had to take Tylenol, Advil several times a day just to take the edge of the pain, just to do the minimum, of the maximum I want to do
Dex Steroids Save My Life! They relieve so much of all of this. Today I feel ok, finally, I don’t hurt so much. Dex Steroids Save My Life on so many levels.
Remember… Myeloma Hates Steroids!

But my immune system is always so low, stealing all my energy and dreams of doing and the things I want to do, and all the things I saved for “later”, for when I retired, and thought I would “own my own life” … ha! Such a stolen life in so many ways…

My treatment crashes last longer now, and I am spending more time in bathroom with surprise side effects. I hate GI side effects, I hate pain, I hate living wondering what will happen each day to me that Is Out of My Control. I used to be so healthy. This makes me so sad. I used to be so healthy. What Happened. Why did my body sabotage me? Why me? Why was my life stolen from me? Whine Whine Whine, Sad Sad Sad…. I seriously ask for so little, want so little, just want to enjoy nature and our home and our animals, and all the humans in our life. I just want to enjoy life pain free. Is that too much to ask. I’m tired. Tired of being tired. Sick of being sick. Done with Challenges… ok Julie, shut up and move forward. I know, I am very fortunate! Going on 11 years with Myeloma, and I am still functional on many levels…

So 5.10.20 was Mother’s Day, and I hope all my Momma friends and followers had a wonderful day celebrating YOU and all that you have done for others as a Mom. Yesterday was a bit sabotaged for me, as Jim’s brain functioned on a more active level yesterday morning, and at about 6:50am our house alarm started SCREEEEEECHING, abosolutely scaring the $#!% out of me. I jumped out of bed begrudgingly as I wasn’t sure what I would be finding in the family room, where Jim sleeps in a chair… that’s another long story I will tell if you’d like to hear…

Long story short, he had gotten up all by himself, walked to the door a few feet away WITHOUT his cane or walker, and opened the door a little bit, setting off the alarm. Most of me wasn’t happy, as I’m soooo very sleep deprived, part of me shocked at his mobility, a little bit of me was incredulous and happy for him. But the part of me that is sleep deprived, achy, tired, hurting, frustrated, etc, and a Cancer Patient that never really gets the “luxury” of “being a cancer patient”…  reacted in a not so “adult manner”. I let him out alone, and said sarcastically…. “ok, you woke me up early, scared the crap out of me, and here you are, with your brain telling you it’s time to get outside and feed the horses, just like you used to”…. “Great for you Jim, if only this was real…”but I’m not going out there at 7am!” “Gooo, just go if you want to, since your body is so ok today”, good for you”… Happy #%&#! Mother’s Day to me”! I sighed, cried, and started to video his precarious walk out to the horse corral. Not his fault, he can’t help his brain-body sabotage either. I hate Alzheimer’s more than I hate Myeloma…

Yes, bad me… but I’m sure y’all can understand my frustrated, overwhelmed, exhausted emotions.

So I filmed him as he slowly, actually somewhat solidly made it to the horse arena, where THANKFULLY our gardener (who I’d hired a few years ago to help with the early morning horse chores, was already out there with his helper), noticed Jim, and immediately went to him. I could tell how shocked he was! I knew he was looking for me or Jim’s caregiver, but we were no where to be seen or found LOL. Eventually Antonio came to the porch and got Jim’s walker, and Jim safely made it back to the house, thank you Tony! Me, still shocked, frustrated, happy, sad, a bit angry, so I had a meltdown with this in my face reality of all the challenges I must deal with daily, with my cancer situation, and Jim’s Alzheimer’s. Maybe I can upload a video from this insane brain event. No doubt, Jim keeps defying the Alzheimer’s odds. I’m happy and so sad for him…

I have a BIG DECISION oncology appointment Tues, May 12, so I will let you know my current Myeloma lab status and what decisions my Dr and I come to regarding changing up my chemo regimen next week. Did I mention that last week I only did the 40mg Dex steroids and 400mg Cytoxan Cyclophosphamide. And Monday (today), I only did 40 mg Dex steroids, as my Dr wanted me to “clear my system” for the new regimen of Elotuzumab Emplicity and Pomalyst…
Oh boyyyyy, here we go…. Ughhhhh

Ok, I will update you on my next post, 5.20.20
Lots going on, chemo changes May 18, MRI coming, head skull neck pain from myeloma lesions, tumor, mass…. oy!

Thank you for reading and caring and posting hellos :)) Stay well and strong on all levels. It’s a job, isn’t it :))

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Myeloma is Too Smart and Currently Winning :((

4.30.20

Hello Everyone-

Hoping all is good with all of you during this new new new normal we are all experiencing. The spectrum of affect is so different for everyone, depending where you live, what your living circumstances are, what your work, home and family and life is, what your medical situation is, etc. As I have written before, not a whole lot has changed for me, as I’ve lived quite the isolated immune compromised life for more years than most people could tolerate. Main change for me, is lack of availability of common household products I used to order easily online, and of course the worry of coming in contact of that sneaky stealth coronavirus.

I have a phone consult with my Dr today, and suspect she will again want to discuss changing up my chemos, as Myeloma is again outsmarting our triplet concoction of Dex steroids, Velcade and Cyclophosphamide. As I have mentioned a zillion times, my main concern with changing treatments is my fear of new side effects. I’m just so tired of 10+ years of not feeling well. Just so exhausted from weekly medication crashes. Just so beat up from being sick for so long. Yes, just sick of being sick. I feel so beat up right now, as I’ve been doing too much around around my house and yard with Jim’s situation, and I had a terrible GI crash late Tues, early Wed from Monday’s treatment. Was on the pottie til about 2am, finally showered around 2:30am. When Jim’s caregiver Chris came in the morning, I went back to bed until around 3pm Wed. Still feel so wiped out (no pun intended lol)

I’ll post screenshots of my labs after our phone appointment, but I did see my IGA and Beta2 Microglobulin the other day, and both are way above normal. IGA is over 1740, and Beta2 over 2. Normal for IGA is 70-400, so that puts me at over 4x the high end of normal… been there before, so I’m not in a panic about it, just sad this treatment is now becoming ineffective, but to be expected by now. I’m still very appreciative that it lasted as long as it has, since Sept 2018!

5.1.20 UPDATE

Ok, here are my most recent Lab results:

IGA
Up up and away…
M Protein up up up
Beta2 Microglobulin
Up up up

Sooooooooooo…. after seeing these results…
You can imagine how the conversation with my Dr went with my increasing lab stats. She is very vigilant, and not wanting to let my levels escalate any further…  Me, I would wait to see if they would magically come down next cycle, or wait until my IGA is over 2000. Stupid, yes. Scared, yes. Not wanting this news, yes. We discussed the reality of my situation with the myeloma increasing, the length of time I have had myeloma, the amount and types of chemo and immunotherapy treatments I have already been through for over 10+ years, and what remaining treatment options are available to me. Yes, I must move forward and accept that my current triplet treatment is no long effective.

I’m still processing everything, but my situation really hit me yesterday, and I had a mini meltdown but eventually pulled myself together as I always do. I’m still very sad today. Guess I still live in a hopeful, too optimistic, dream world, that my Myeloma will magically be in control, and I can go forward with my life, and pretend I am ok. I still hope each morning I will wake up, and Jim will be his ol self again, and I will be ok, and we can can back to our pre-illness life. I really don’t want much, I just want to feel good and have functionality. Yes in the BIG PICTURE OF THE WORLD RIGHT NOW, I am very very fortunate, and I know it. I just miss my old life, and I miss all the potential things I had planned on doing in this chapter of my life, had I been well, had we both been well… oh well… forward march Julie…

So THE PLAN…
I accepted my fate reluctantly, while pleading and negotiating no drastic medication changes. Ha Ha! I never want to NOT be on myeloma pummeling meds, no matter what. I know my Myeloma, and know how aggressive it is, and know that left UNtreated…. it escalates FAST! Even in the end… I will do Dex steroids to feel ok. So my Dr recommended we stop my current triplet of Dex steroids, Velcade and Cytoxan and MOVE TO Elotuzumab Empliciti https://www.empliciti.com/ with Pomalyst https://pomalysthcp.com/triplets  and Dex.

She told me a “transition period” is needed to clear the current meds out of my system, which makes sense, and to just take the Dex steroids for the next 2 weeks. But that scares me. Just Dex… there you go myeloma. Free ride to take over… We would then have an in-person appointment, second week of May. I again mentioned how my numbers have rollercoasted over the last 10 years and I wasn’t too too worried about the levels now, and could we just go another month, and see what happens, blah blah, me thinking one month will do something magical, blah blah, ha ha…  Nope, she’s worried about the upward trend, and doesn’t want to wait to see what might happen, and actually, no point in waiting, the trend speaks for itself… Ah, yes… my numbers speak for themselves… Ok, ok, here we go… cccchhhhange…

So we will drop the Velcade starting now. My last dose was this past Monday, and I’m pretty proud I tolerated it to shot #80! Yes, 80 shots of Velcade. 80 weeks of Velcade! Go me. I have had a bit more Neuropathy in my feet lately, so perhaps this is the best decision.

The New Plan:
I will do Dex and Cytoxan (Cyclophosphamide) on Monday May 4th, without the Velcade. This will be my last dose of the 400mg Cytoxan pills. Then the following Monday, May 11th, I will just do the 40mg Dex steroids. Then Tues May 12th, I will meet with my Dr to discuss the new plan of Elotuzumab and Pomalyst, to begin on Monday May 18th.

Not happy myeloma is once again winning, but grateful I have options.
Scared of new side effects, but sadly used to it.
Tired of the whole thing, yes, but I won’t give up yet!

Beautiful sunset view from my backyard the other day :))
Yes, I am still very very fortunate…
Jim’s roses are so beautiful this year!

Thank you for reading and caring about my crazy myeloma story. Stay well, stay away from all the cooties and I hope your life is less complex than mine!

Categories Uncategorized

4.20.20

Hello Friends,

Hoping everyone is staying safe, well and away from all the Cooties! If you’re a Myeloma patient, I’m guessing CoronaV has not changed your life as radically as for a “well person”, right? We’ve been “sheltering in place”, “quarantining”, living in our “protective bubble”, avoiding cooties and germs since diagnosis/chemo, because we’re so Immune Compromised! Myeloma and treatments have forced us to be ultra aware of cootie cross contamination, so we clean and sanitize everything and everyone always! We were trending before all the current trends!

Remember this game!

Nope, my life hasn’t drastically changed because of Covid19. If you’ve been following my 10 year story, you know my lifestyle and challenges, and my philosophy of “self protection”. So all that has drastically changed for zillions of the “healthy population”, hasn’t really changed that much for me. Yes since my Myeloma diagnosis, I’ve limited my life more than others probably would, but hey, it’s worked for me for over 10 years, and I haven’t been super sick beyond the annual bouts, haven’t been hospitalized, and haven’t had Pneumonia.  

BUT that raises a Very Interesting point, that the news is all a chatter about…. COULD WE HAVE BEEN EXPOSED TO, AND POSSIBLY EVEN HAD CORONAVIRUS/COVID 19, sooner than we were aware, before the announcement of a “Pandemic”? I think back on how I was sick off and on late Dec, Jan and into early Feb! I remember feeling a strange sickness, but I would always rebound in time for my Monday’s steroids, Velcade and Cytoxan. Yes, the steroids would always mask symptoms, and I think that was probably part of the problem of getting and staying sick for so long. I just kept pluggin along, because I have to… I really wasn’t awful until late January, when I finally wound up with a fever for about 4 or 5 days. I remember early Monday morning, before the 40mg steroids kicked in, I felt dizzy, light headed and not well at all. Then the steroids kicked in, and I rebounded. But I bet I was getting sick then, as next day, late Tues night, early Wed I developed a fever, and it was downhill from there for the rest of the week.

I remember being surprised I didn’t have a lot of nose congestion issues, or chest congestion, but I did have a never ending awful headache and cough. Probably fractured a few ribs coughing so much. So many other random symptoms too. I also recall using my inhaler that I rarely, if ever used. Would be really crazy if I actually had CoronaVirus Covid 19!! There are so many articles and posts about it, I’m sure you’ve read it too… Guess I won’t know until a reliable Antibody test comes out.

https://news.usc.edu/168810/usc-covid-19-antibody-researcher-answers-questions-about-testing-in-l-a-county/

https://www.usatoday.com/story/news/factcheck/2020/03/26/coronavirus-fact-check-could-your-december-cough-have-been-covid-19/2899027001/

Well, aside from CoronaV, things escalate daily with my Alz hubby. Tragedy beyond words… but I don’t feel like whining about that right now… well I do, but I won’t :((

I’m suspecting Myeloma is rearing it’s power again, as I have symptoms that remind me of initial diagnosis and other years when my IGA and M Protein escalated. I am tired and fatigued all the time, but just keep going, cuz I don’t have a choice… I have more headaches, neck pain, bone pain, etc. Hate hate hate the awful headaches, neck pains, etc. Which reminds me that I am supposed to go for another head scan… I think I had another lytic lesion(s) my Dr wanted further looked at… so much has happened 2019, 2020… I just can’t keep up with it all… I have a phone appt on the 30th, so I will ask then. Maybe I will email her sooner, as I the headaches last week, and especially this weekend really revved up. Steroids today lessened the intensity thank goodness.

So I’ve been thinking about what treatment protocol I would try next, when my current 40mg Dex, Velcade and 400mg Cytoxan-Cyclophosphamide stops working. I’ve thought about asking my Dr if we can go backwards and try combos of previously used chemos. As you know, I am so scared of new meds because of I am so scared of new, unknown side effects..

Here are some other good links of things I’ve been thinking about…

https://www.myeloma.org/videos/askdrdurie-it-okay-take-vitamin-b12-same-day-velcade-0

https://www.myeloma.org/blog/dr-duries/are-women-risk-myeloma-if-they-sit-too-much

https://www.myeloma.org/cure-blog/future-looks-bright-including-cure-myeloma

LOL LOL
Take care everyone, and I hope you and your loved ones are all doing ok in your “safe at home” bubble. Please let me know how you are, and for my Myeloma friends, please let me know the various treatments you’ve been on, and any recommendations you have for my next step!

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Yep, I’ve Been Saying It for Years! :))

4.10.20

Hello Everyone!
Hope you are staying well and CoronaV free. There’s so much to say about the craziness in the world right now, but I know you are reading and watching what I am, and you know what I know, so no need to rehash it all here :))
BUT, I will say (with a big smile…) all the sanitizing guidelines and new epiphanies about cleanliness and not cross contaminating cooties between everyone, continues to crack me up. If you’ve been reading this blog for a while, or know me personally, you know what I’ve been saying forever about “air hugs”, “air shakes”, wash your hands, don’t cross contaminate, etc etc etc etc…. right :))))

BUT what I loved most this week was Dr Fauci recommending NO MORE HAND SHAKING! Wellllll duh world!!! If you think about it, what really is the best guarantee of transferring germs? Yep, Dirty Hands! Again, sorry, not sorry, haven’t I been saying this for years and years and years. OMG if everyone would just use common sense, I don’t think we’d be in the situation we’re in. Keep it clean, and keep yo self clean!

I wasn’t an OCD cautious cleaner all my life. In fact, I’ve always worked with students and the public, and always lived with, and been around many types of animals all my life. I used common sense, but I never had antibacterial wipes in the barn when I was young. I never sprayed surfaces (and people) down with Isopropl Alchohol in my early life. You know when all my super smart and careful cleaning began? It began when my son went thru the “reptile stage”, and we acquired Iguanas, Snakes, Turtles, a Tortoise, etc. Reptiles are known for Salmonella and eColi! We just used common sense;  washed our hands after handling the animals, and their cage. Thinking back, I shared carrots and apples with my horses (well I did take the first bite). didn’t always wash my hands when eating around them, and when my kids were little, they crawled around and played in the dirt. We were a very healthy family, only the “normal” amount of colds and flu when they were growing up. 

So if I was so “healthy”, where did my Myeloma come from? Probably from all the chemicals I was exposed to. Horse fly spray, grooming sprays, things my husband sprayed around our property before I banned them, lol, dirty smoggy air, chemicals in things and foods, etc. But germs, I was aware of them, illness and staying well, but nothing like what’s going on now with CoronaV, and being on chemo. 
All else is status quo with me. Same compromised immune system since my last post, and same Myeloma numbers. Everyone asks me what I plan to do with my increasing Myeloma status. Well nothing right now. Can’t handle another challenge right now, don’t want to deal with new side effects of new chemos. How high will I let my IGA and M Protein go until I brave up and do something? I don’t know. Been super high before, and I’m still here. Been up and down a lot over the last 10 and a half years. How High will I Let my IGA go… hmmmmm…. good question… I’m just living one day at a time, staying away from most everything and everyone, and trying to be ok physically and mentally… just like everyone else. 

Just loooove Kaiser’s screening protocol
Keeping all of us safe and healthy!
My super amazing, incredible, wonderful 
Kaiser chemo nurses!
I gave them “Corona” chocolate :))
Stay well, stay safe, take care of yourself and your loved ones, and appreciate anything positive that comes your way!

https://themmrf.org/2020/03/multiple-myeloma-and-the-coronavirus/

And for my Myeloma buddies, I’d love to know what chemos, immunotherapies, protocols you’re on, or have been on, and your success, side effects, time line on them, etc, so I can get an idea of what might be next for me. I read about all the options, but it’s great to hear personally from those that have direct experience with specific treatments. Thank you for in advance for sharing :))
Until next time… 
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No April Fools Day Jokes This Year

Hello 4.1.20

Often I have posted a funny, sarcastic or joking update on April Fools day, but not this year, with all the scary and sad things going on with CoronaVirus! Ugh, at first it seemed overly dramatic on the news, with the word “Pandemic” flashed all over our screens. Now reality has set in, that this tiny microscopic virus is HUGE! I just can’t wrap my head around what’s happening. Can you? The impact on the world, on society, on each one of us, is just enormous. Maybe in isolated, minimally occupied areas of the earth, things are different, but in large cities and communities, this thing is overwhelming. I am not the type to panic or have anxiety, but the longer this thing goes on, and the longer there’s a possibility of me and those in my circle being infected, the more “scared” I have become. First Myeloma is trying to kill me, now this little critter is out to get me… ugh, I just want a simple, uncomplicated, drama free life for whatever time I have left. And I just want to feel ok. Is that too much to ask???

Anyway, we’re all aware of what’s going on, so I don’t need to go on and on about it all here. Please stay safe everyone, and hopefully this monster will pass soon, and medical science will get it under control. Thank goodness for all the super smart researchers working so hard to figure this out for all of us!

So in my little world, Myeloma thinks it’s time to aggravate me, and overpower the meds I am currently taking. Here we go again with how smart biology and chemistry is, and Myeloma’s ability to mutate and become smarter than the drugs trying to kill it. I’ve been on 40mg Dexamethasone steroids, Velcade and 400mg Cyclophosphamide/Cytoxan since September 2018, and that’s a remarkably long run for me! Often my type of Myeloma is able to overpower the meds within about a year or less, so I am grateful I’ve had as long as I’ve had with this current triplet battling for me. It’s a crazy way to live, month to month, actually week to week, actually day to day, wondering what’s going on inside me and wondering how powerful Myeloma is becoming.

Well here’s my recent IGA results, and you can see what is going on:

January I jumped to 1000, then February down to the 500’s, now March way up to the 1400’s! How crazy is that!! Normal is between 70-400. Additionally, my M Protein (M Spike) has increased to 1.02, (zero is normal). So here we go… the Myeloma roller coaster on one side, and Corornavirus on the other side. And of course the continued insanity of my husband’s Alzheimer’s. Just never expected my “golden years” to be so full of “platinum” drama lol.

What am I going to do, you ask. Well nothing, as I just don’t want the stress of changing meds and dealing with new medication side effects at this time. As I write this, I am having side effects from Monday’s chemo, but over a year and a half into this protocol, the side effects are fairly predictable and somewhat tolerable. I feel yucky, but still functional, as I’m always pushing myself… except when I feel completely awful… which is what I fear from CoronaV. I was so sick with a “headcold” or “flu” so much of later Dec, into most of Jan and I think into early Feb. Took me a long time to get well. I just hate feeling awful, and just hate feeling sick all the time, from Myeloma, side effects, chemo, etc. Maybe I had CoronaV back then, and now I’m immune! Wouldn’t that be an ironic miracle. And maybe all the meds and chemo I’m on, and have been on, will fend off CoronaV!!

And now…  a Huge Shout Out to my amazing local Kaiser that has implemented incredible cootie screening protocols! Here’s a few pics I took on Monday when I went for my Velcade shot. I actually feel safer now, then ever before, as the cleaning and sanitizing, and screening for sickies and cooties is way beyond anything I have ever seen. And it should be like this all the time! Cross contamination is what gets all of us, the well and the sick. Just be clean people, and have common sense about what you touch, what you cross contaminate, where you walk, and touch, and take precautions around dirty humanity! Yikes I have been saying and doing this for decades! Most likely why I am still alive, and why I’ve been able to battle Myeloma back for over 10 years now!!!

Yaaaaaaaaaaaaay for Kaiser:
Just looooooove my Kaiser staff!!

You can’t enter the parking structure now
without being screened!
Look at this!
After being directed where to park,
you can go to the entrance
Where they actually screen you,
ask questions, and take your temp!
Awesome!
Back off coooties!
And it’s Valet Pharmacy Rx delivery in the parking lot!
Looooove all these new protocols
to keep us safe from crazy CoronaV!
hahahhaaa!
Yep!!!
Take care everyone, and be smart, wash wash wash, clean clean clean. Take your shoes off outside your house, stop close contact with everyone, sanitize any personal space surface that you’ve contaminated with cooties from public places. Be super clean inside your own home. Always be thinking about what you touched where, then touched that other thing, with that, then touched this, with that! It’s amazing how germs are shared. Cooties lurk everywhere to get us, and now everyone is seeing how much smarter they are then us! I’ve known this, but everyone thought I was an “OCD germaphobe” lol. Not so much anymore! Get outside in fresh air as often as you can! I’ve made it 10 years with Myeloma, so I’m doing something smart, right :))
Thanks for reading and I’ll be back again soon :))
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Soooooo Many Challenges

Hello 3.30.20

Have crazy lab reports to share with you, but I didn’t have time today to finish capturing the screenshots and posting because my Alzheimer’s hubby has been super challenging these last few days :(( But I did make it today for my Velcade shot, along with taking the crazymaking 40mg of Dexamethasone steroids early in the morning, and later after Velcade, slamming down 8 lovely baby blue Cyclophosphamide Cytoxan capsules at 400mg. 

Promise I will share my news tomorrow 3.31.20… or perhaps I should wait til 4.1.20…. “April Fools Day”, as the Universe is sure having the last laugh on my behalf and all of humanity!! Can you believe what is going on!! I marvel at how smart biology and chemistry is!! How one little virus cell can control and change the world, right! And how cancer controls our personal biochemistry within us!!! No doubt, Mother Nature is smarter than humans! Just incredible what is happening with coronavirus! Medical science and the hearts of humanity are amazing, but seriously, one little tiny cell, many tiny little cells, taking over and stopping the world! Just mind boggling!!

Thank you Matt for finding this!

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Vigilance and Vindication Overload!

3.20.20

Hello Everyone!
I’m sure you’re as mentally beat up as I am. I almost wasn’t going to post, but I just didn’t want to break my commitment to post on my symbolic numerical days. I love that I’ve been writing this blog for almost 10 years now, and CoronaVirus isn’t gonna bring me down :))

I have so much to say, but I’ve probably said it all already… said it, written about it, a million times over! Simply put, this awful Virus has totally Vindicated my OCD smart sanitizing lifestyle. I wouldn’t have survived all the years of Myeloma and chemo treatment’s ravages on my immune system, if I hadn’t cleaned and sanitized and wiped off basically every public contact surface in my life. I should have bought stock in isopropyl alcohol manufacturing companies! All the cleaning and sanitizing instructions all over the news, social media, from friends, family, public service announcements, etc, IS EXACTLY WHAT I HAVE BEEN DOING AND PREACHING for over 10 years!!! Actually for most all my adult life. I’m just a bit smarter, or have more common sense, then most. Sorry, not sorry, but it’s true. All this cleaning and sanitizing and being aware of deadly Cross Contamination, is JUST PLAIN COMMON SENSE CLEANLINESS!!! And I’ve been doing it ever since forever with animals and working with the public.

Unbelievable the world needs to “learn” 
how to wash your hands
and how to be clean!
I’m so ahead of the curve and trending before the trends!
I used to make these personalized scented Isopropyl Alcohol sprays
for my kids and their friends waaaaay back in 2000’s,
They loved them. Friends would beg me to make them a bottle!
And all this…. 
Waaaaaay before Myeloma!
And waaaaaay before CoronaV!
I made these when the kids went on Spring Break trips,
When they moved out,
When they went away to college,
And for around our house.

Wipe it all off, if it has public cooties
Wipe it off so things don’t cross contaminate
Don’t touch dirty public cootie surfaces directly
Don’t cross contaminate things (food, surfaces, etc)
Wash Wash Wash
Clean Clean Clean
If you touch this, don’t touch that
Keep your dirty paws away from your face
Don’t touch public surfaces directly, think about what you touch where
Clean off, sanitize anything that comes into your house or private space
Wipe Wipe Wipe it off
Don’t wear public shoes in your house
Don’t wear dirty germy clothes in your house
Be super clean in your kitchen
Wipe down things that involve food, utensils, your sink, your refrig, etc
Don’t cross contaminate
I practiced clean hygiene forever. That’s why we had very few illness, no food poisoning, and no animal Salmonella (we had reptiles for years!), not to mention all the ranch issues. But I have always thought our Animals were cleaner than Humans LOL, as we keep everything so clean. Jim used to clean the horse arena several times a day,…

I’m beat up from this life…
From my poor hubby having seizures on Monday…
From CoronaVirus overload
From Germ transference fear overload
From trying to get normal household supplies exhaustion
Exhausted from trying to find what I need, and everything is sold out online

With all the “shelter in place” policies, I cannot believe online ordering and delivery is not the standard practice now! I’m so sad there isn’t grocery delivery or Walmart grocery pick up anymore.
Doesn’t that make the most sense now! All the people crowding into grocery stores, standing in lines, defeats the “social, physical distancing” we’re all supposed to be doing! I am not going to stores, I am not standing in line… it’s all so hypocritical and ridiculous!
How can Costco and Walmart be sold out on everything, even with all the Hoarders?!
This is just insane!

But I can’t help be a little humored that is going on… Not humored by the CoronaVirus! That is truly scary. Just humored by all the conversation about how to stay clean and sanitary now. Everyone is just now doing what all us cancer patients have been doing all along to stay alive and protect ourselves from germs and illnes.
I’ve lived the cootie free Bubble Life, and Shelter in Place life forever now it seems… this is my life, so life has hardly changed for me and my family. I don’t ever do much socially, or do much in public, or go many places since my Myeloma diagnosis, so no new adjustments for me. My homebound, protective life is nothing new :))

Found this the one time I went to CVS
before the “Shelter In Place order”
Take care, be careful, be vigilant, and feel proud how clean and protective you’ve been of yourself and loved ones way before CoronaVirus!

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Thank You CoronaVirus for Bringing Awareness to GERMS and the Immune Compromised

3.10.20

Hello March
or should I say Hello March Madness :))))
Sorry, Not Sorry… but Thank You CoronaVirus for bringing awareness to Germs, and COOTIE CONTAMINATION! Finally! Awareness! Let the cleaning and sanitizing commence! What’s going on now, is what SHOULD be going on all the time, everywhere, every surface, every public and private place!

Long before Myeloma, I was super conscientious of cleanliness, always sanitizing and cleaning my office and keeping our home clean and cootie free. I cared for many types of animals outside and inside our home, as well being around the public daily as a college counselor. I was always acutely aware of germ cross contamination. Ecoli, Salmonella, Norovirus, colds, flus, viruses, bacteria lurked everywhere. Germs everywhere. Germs on people, critters and food. I hated being sick when I was “well” and I hate it even more being so sick with Myeloma, chemo side effects, and always immune compromised. Being aware of potential illness is just common sense. Taking precautions to not spread germs is just common sense. So all this new awareness and hype of being clean and sanitary is just amazing to me, and so welcomed! But What was being done, rather Not Done, before CoronaVirus??? Scary to think…

I’ve always been shocked how “stupid” and unaware the general public is regarding how germs are spread and transferred from human to human. The dirty habits of people was always quite “disgusting” and surprising to me. My students always commented how clean, fresh and nice scented my office was. They were always thankful for the wipes and antibacterial gel I kept handy for them. I was CLEAN and SMART long before it was all over the news with CoronaV. I was the Ninja cleaner before it was Cool! As a result, I rarely got sick.
Living on a Ranch, with a constant flow of kids and animals, I always had our visitors wash up before they came in the house, had them take their dirty, public, pee and poop crusted shoes off, or put on cute disposable booties! Sure everyone thought I was OCD and overly worried about germs, but seriously, who wants gross things in your house. Think about where hands and shoes have been! Think about how INFREQUENTLY people wash up. Think about how much physical touching of things people do. Think about all the gross, rarely cleaned surfaces people touch…. Ugh, just pisses me off to recount attitudes and resentments, eye rolling and sarcastic jeering I’ve encountered over the years. 
So THANK YOU CoronaVirus for VINDICATING me :)) What I’ve been preaching and teaching forever, is all over the news and social media now. C’mon folks, really! What was going on before CoronaVirus brought attention to staying clean and trying to stay germ free! Think about all the public surfaces that are touched and not cleaned frequently. Seriously think about ALL those public surfaces everywhere that are not normally sanitized. I have always been aware of that, and used paper towels or wipes to open doors, touch handrails, elevator knobs, etc. When was the last time you sanitized your car steering wheel? Your cell phone? When was the last time you cleaned door knobs in your home, office. I was even surprised how “unsanitary” many of the surfaces were in the hospital when I was an inpatient for my Stem Cell Transplant. I often had to remind staff to wipe down certain areas. And then the staff… always inadvertently touching their face, clothes, hair, and one Dr sitting with his leg over leg, touching his shoes! OMG, finally, one appointment I pointed it out to him. He wasn’t happy. Then everyone touching computers, keyboards, cell phones, fixed phones, etc., then going from patient to patient. Even if they changed gloves, they still touched things after they had their gloves on, and cross contaminated everything. No wonder people get sicker in hospitals and medical facilities. Yikes…. I can’t believe I’m still alive with such a compromised immune system all the time!
And waaaaaaaaaaaaay before CoronaV, I was queen of AIR HUGS and AIR (hand) SHAKES! Again, everyone rolled eyes and thought I was OCD, but warrior here… 10 YEAR MYELOMA SURVIVOR as a result! How often do you see people NOT washing hands after using the bathroom! How often do you see people touching their body parts, then touching everything, then wanting to shake your hand. I always thought that was a stupid societal custom. And now all over the news, is all the goofy non hand shakes. Common sense people, common sense. Where has it been. And think about airplanes and airports, and all of public transportation… Restaurants, dirty menus, unsanitized tables, chairs, booths… who really know what goes on in the food prep area… Ugh, I have to stop writing about all this, as it’s turning my stomach, especially with chemo crash beginning… 
So currently my Myeloma numbers are like the Stock Market! The last several months, my numbers were going up up up, and my Dr was beginning to worry, and began talking about changing treatments. With all the insanity on my homefront with my husband’s Alzheimers status, I just can’t take another challenge on, with changing treatments, and dealing with new side effects. Yes, I know eventually I will have to change, but I’ve learned over the last 10 years, my Myeloma is like a roller coaster, always fluctuating. I just don’t panic about my increasing numbers, until they’re in the thousands. When I was diagnosed, I was 70% Myeloma, and my IGA was over 5700. Since then, it’s fluctuated as high as being over 4300. Guess I naively always think there will be a treatment out there for me, and magically there is! Each time my IGA skyrocketed, my treatment Angels showed up and my Drs found a wonderful chemo elixir for me. I am very fortunate that I respond well to meds. Yes my Myeloma is too smart and aggressive, but the amazing cell pummeling Immunotherapies and chemos eventually win over… albeit temporarily. So thank you 40mg Dexamethasone Steroids, Velcade injections and 400mg Cytoxan pills for still pounding the nasty myeloma cells since September 2018! 
And take a look at this CRAZINESS
How can my IGA drop 500 points in one month! I thought this was too crazy, so I did my labs again a few days later…
There we go, my Myeloma roller coaster! Down up, Up down. Who knows what this month’s labs will reveal.
And my CBC labs… Yikes! See, this is why I’ve been a Cootie, Germaphobe all my life…
From a CoronaVirus post:

Back off with your nasty germs!
Ok, I’ll sign off here, but I always come back to edit :))
Time to eat before the yucky, nausea chemo crash from Monday really hits me. I’m making my special old family secret recipe of high protein cottage cheese pancakes. I made them a few weeks ago when CoronaV first came out, and we laughed that some of my pancakes looked like the CoronaV cells!
Thanks for checking in and caring about my life story as you do! Hoping you are well, staying safe and being smart, so the cooooooooooties don’t get you. In all seriousness, it is very scary for us immune compromised and weak immune system people. Those are the ones that are not making it, if they get sick :(( Stay well, stay clean, and be smart about being around the dirty public!
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