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.
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..
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!
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!
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 :))
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!
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!
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 :))
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!!
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 :))
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!
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!
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!
Hello end of January 2020! I’m not sorry to see you go.
January and December have been yucky months for me, full of several illnesses, never ending side effects, Alzheimers challenges, sickness, illness, pain, sadness, and lousy on going realities.
Just not the same girl writing this blog, as who began writing years ago. Used to be so optimistic, so positive, so full of hope and fun fake steroid energy. Not so much anymore. Illness, sickness and lack of sleep is just wearing me down, and stealing “me”.
Who I was, is certainly not who I am now. I honestly never realized how illness, being sick all the time, being around ill people all the time could change someone so much, so profoundly. I confess, all my optimism, positivity, “you can do anything” philosophy I encouraged with all my students and anyone that sought my counsel, advice, opinion, etc, was really NAIVE. I know I felt life deeply, and understood life and people’s challenges deeply, and worked hard to build others up, no matter what… But oh how the saying rings too true, “you don’t REALLY know, nor can you REALLY understand another person’s circumstances until you have walked in their shoes”. Yes I had overflowing empathy, sympathy, understanding for everyone’s life circumstances and issues, but I realize how much I really did not know the life draining impact of illness, sickness and being continually sick.
We can try to understand other’s situations, circumstances, life challenges and deep feelings, but we can’t really understand another’s situation, unless yours is the same or similar. Yes, we can generalize and “apply” our understanding of pain, hurt, sadness, depression, desperation, hopelessness, etc, from one to another, and one issue to another. We can care deeply, help and build others up, give encouragement and support, but one’s own subjective pain, desperation, hopelessness, and sadness, is undeniably topic and issue specific. I always “knew” this, but KNOW it so much deeper now. My cancer challenges, my emotional pain, my sadness, my disappointments, my frustrations, my life devastations are just so awful to me, no matter how “ok” it looks on the outside. It’s just so sad with what has become of me and Jim. The tragedy is incomprehensible…
In my other life… I always felt my student’s issues deeply. I understood their emotions and challenges from a loving, caring, build you up, get you to your dreams perspective. But what we comprehend and understand is what we have survived, endured and coped with. It is so very specific and subjective to our individual circumstances. I suffered with the “trauma” of being a stutterer all my life, and applied my pain, insecurities, self doubts, and life lessons to everything I did. I was a better person and counselor as a result of my depth, awareness and sensitivities brought on by my personal suffering and challenges.
We all know the issues humanity is confronted with is overwhelming, tragedy is everywhere, every day. I believe no matter who you are, where you are, it’s our SIMILARITIES that connect us. There’s a bond, a sisterhood, brotherhood, we have, when we share the similarity of a particular pain, survival and overcoming. I can never forget the awful life experiences my students and friends shared with me. What they have endured and survived is mind boggling. My heart and head would explode with empathy and understanding when they would share. I could feel their feelings along with them. I truly could, but still, for all of us, that understanding is still limited to our own subjective experiences, beyond any empathy, sympathy we can offer.
In my little world of my awful challenges, having INCURABLE CANCER, Being on NEVER ENDING CHEMO, ALONG WITH a daily deteriorating ALZHEIMER’S HUSBAND, is a life circumstance that is just so intense, not many can really relate to. Our lives are like a living death every day. I’ve lost my life to everything illness. So much has been ripped away from me. We lost our dreams and life as we knew it. We’ve lost what we worked all our lives for. I lost a husband who was everything to everyone. We live, rather, exist, each day knowing we can’t change the outcome. We cannot control or change the outcome of our situation. We just have to keep living this nightmare over and over and over again, every single day. Process that.
I know those in my circles care deeply, lovingly empathize, and try hard to understand what I am going through. But the depth of my challenges are so intense, and issue specific, no one can really know what I am confronted with, except my Myeloma buddies and Alz buddies. Is here anyone else out there who is living both? Yes, there are far more awful situations than mine, and other’s far more challenged in ways I could never handle, but I’m at my breaking point daily, with all that’s on my plate. I’m just so beat up from just surviving day to day. So beat up from being sick all the time. So beat up from lack of sleep. Everyone thinks I am so strong. I am not. I don’t want to be strong. I don’t want challenges. I just want to be who I was, who we were, and live a simple uncomplicated life. Life is too complicated for me now.
Each day, week, month, year, our circumstance hits me harder than ever because we were such an incredibly functional team. No problem seemed unsolvable years ago. We were doers, fixers, problem solvers. I could “fix” things at home and work. We both “fixed” whatever was broken, literally and figuratively. I shared my optimism and move forward philosophy everywhere. I truly believed anything could be solved or “fixed”, or at least repaired…
Our situations cannot be fixed.
Myeloma is incurable, deadly
Alzheimers is incurable, deadly
Myeloma is treatable, but treated continually, non stop, or I die
Alzheimers is not treatable. It’s a slow journey to death, no options.
I don’t have the choices and options I once had, and that was always the core of my being. CHOICES AND OPTIONS. I don’t have those anymore. Cancer, treatment and side effects have stolen my choices and options. I’m a prisoner to illness, feeling ill, being ill, feeling sick and being sick most all the time. The only relief I have is on Steroid Day. And then The Crash… the awful being sick, guaranteed feeling sick for days…. I’m just so sick of being sick :((
Yes, I’m feeling down today. Yes my dark cloud will lessen, but it’s been a tough December and January with so much headcold, fever headcold, coughing, hurting illness, along with all of Jim’s unsettling, tragic daily challenges, and now a bit of lousy news from my Dr appt on Tuesday:
My IGA continues to climb, around 100+ points per month. Jumped to 1000 this past blood test.
M Protein went down a spec, from .8 to .7
My Dr is concernered with the upward trend and started to talk about other chemo options, but I just can’t make any changes right now, as I just can’t handle any more challenges, new side effects, etc.
My recent Pet Scan revealed a new lytic lesion at the base of my skull. My Dr wants me to do a MRI for additional detail. I will do this, but don’t want to do it with the contrast, as I’ve read the Gadolinium, or Gadavist is a concern for those with kidney issues, allergic reactions, etc. I recall reading something about Myeloma patients should avoid it due to myeloma specific issues, kidney issues, etc. https://www.itnonline.com/article/debate-over-gadolinium-mri-contrast-toxicity
My Creatinine levels are actually good, and I never did have kidney issues, but why start now! I just don’t want to add one more thing to my “worry plate”, or regret that I did that plate.
Anyway, blah blah blah…
I am so sorry my blog has turned so sad, and I don’t have the funny, uplifting stories I used to share.
Today was the usual Monday Medication Madness of 40mg Dex Steroids first thing in the morning.
Then one Velcade shot in the belly jelly in the aftternoon.
Then 400mg of Cyclophosphamide chemo pills with dinner.
How’s that for a Myeloma pummeling triplet cocktail, that so far has done the trick since about September 2018!! Hoping to stay on this madness for a long time, as I’ve got the routine down, and I can somewhat predict the weekly crash and side effects.
Get in there Velcade and do your thing!
I have a Dr consult in person this coming Thursday, and should have all my Myeloma status labs by then. I always silently “bet” with myself if my numbers will be around the same, or down, or up…
Not sure what I’m feeling, guessing from yesterday’s labs… hmmm…. what’s your guess?
I only cheated with doing half the Dex steroids back in Dec, but have been a good patient ever since. Back to “high dose” 40mg Dex weekly, so maybe my myeloma numbers are status quo, or down? I have figured out that when my WBCs are low, I get a bigger reaction from Dex, then when my WBC is higher. And I was shocked at my CBC results from yesterday!
My WBC is a shocking “high” of 3.7 (which often means I am sick, or getting sick), RBC low tho, but all my organ status labs, creatinine, calcium, etc, are in the low to normal range. How can that be?? How can this ol bod tolerate 10 years worth of continual chemo, meds, immunotherapy, etc. How long have you been in treatment, and continually on treatment?
You know those cancer articles, TV pharma commercials, poignant news features of one’s loved ones being on chemo for 6, 9, etc weeks, or months, and the families are devastated with what happened, then fortunately able to celebrate treatment success… Well I do a mental gulp (sometimes a pissed snicker if I’m on my steroid crash), at the “short” treatment time mentioned,… as what I and my Myeloma buddies would do for a short treatment outcome, not to mention, being “done” with chemo!… My heart truly hurts for anyone’s diagnosis, but TRY DOING 10 YEARS WORTH OF TREATMENT, not 10 months!! Try knowing your treatment is forever and endless, to “the end”… Honestly, lucky them for being able to “ring the bell” of being DONE with chemo treatment in a “short” amount of time. Ring the bell, ha, not this gal, thanks to Myeloma’s incurable status. Not bitter, just facts, just reality. Sorry I keep perseverating on this, but I’m just still so surprised and shocked with my situation. This just can’t be! How can I have cancer? How can I have incurable Myeloma? How can have been on weekly chemo treatments SINCE 2010!!??
Some of my Myeloma status labs will trickle in before my Thursday appointment, but some are not released until I see my Dr. But I will update this post as the lab results come in, so check back if you’re curious my MM status.
All else is continued loony bin ridiculousness here… again, just can’t wrap my head around how our lives became all about sickness, illness, side effects and dysfunction. Just mind bending. If you know us personally, you get this shock. But as I always say, I have so much to be grateful for, especially considering the BIG PICTURE out there, and what I read on all the myeloma social media posts. Wow, the suffering and challenges are just unreal :((
Here’s to hoping your’re able to work on your 2020 dreams and goals.
My top goal for 2020 is “Less is More” regarding slowly sorting thru all our 38 years of stuff… I have so few “good days” where I have the helium to do this, but thinning things out, and storing away the sentimental mementos is my top priority. It used to be that if my inner self was at peace, calm, organized and joyful, all was ok. Now, forget that LOL, it’s all about the external visual. Lessening perceived visual chaos, which in turn lessens my inner chaos, and brings a sense of calm and peace to my life. Our awesome caregiver Chris moved my (finally packed up!) bins and bins and bins of Halloween and Christmas decorations out to our “storage trailer” in the back. Sadly this now “storage trailer” used to be Jim’s off road toy trailer. Shows how much our life has changed, and the sad symbolism of a fun vacation trailer, becoming a storage shed :(((( Jim would be so sad if he could comprehend all this, but sadly, his Alz self just can’t process our reality. He does know when I’m gone to chemo, and wanders around the house and property (with his caregiver) looking for me :(( He still tries to do horse chores, as that’s the old routine embedded in his psyche. Just such a tragedy on every level for him, as he was so healthy, and so active, and should have had old age fun as an old ranch guy, just moving around slowly, but functional, picking up the horse poop, planting roses, raking the dirt, cleaning the barn, shopping for us, etc,… He loved nothing more than “doing”, being busy, doing. He’s just “existing” now…
We never know what’s coming down the line for us. And I certainly did not anticipate the big ol train wreck we are…
This is what I had hoped for…
May your dreams continue to come true, and your life goals always be in process…