A few weeks after the bone marrow biopsy I got what Dr Google convinced me was sciatica … which is pretty normal after such a procedure… however the weeks that followed slowly showed me that is not what it was… rapidly and uncomfortably this mass grew in my leg… I can talk about it now… because it is out. 48 hours ago they sliced me open and removed it… it shows characteristics of being benign…. meaning no tentacles or teeth id assume? although it would have made for a funner blog post if it had …. ha!
Created for the National Cancer Institute, http://www.cancer.gov
Darth Lumpious measured somewhere between the egg and the peach on this helpful little comparison chart.
We do not have the pathology back yet… but i’ll take the lack of teeth and tentacles as a good sign… I have good drugs… and a positive attitude and truly the most supportive loving tribe on the planet.
Mr Amazing has been by my side the whole time, and I am not always a model patient… I do not know what I would do without him. I cannot even begin to imagine what this has felt like for him… and he offers to help with everything while repeated being snarled at that I can do things myself… he still offers… I love him so much.
My Smalls have been helpful… and my tinies have been my comfort leading up to this.
My Charlie Bosephus… My favorite gift of all time and space from Mr Amazing has been the cutest side kick to recover with ever…
There is so much more to this story… and if I were not completely mind numb from pain pills I would entertain you with stories of the two surgeons who didnt want to touch it… and the two hour MRI where I was positive I was going to die in there…. and the Ultrasound tech who had no poker face… but I will save that and leave this as a simple update and record of whats happening in my world.
I am so grateful for everyone in my life… I cannot even begin to imagine what I have done to be so lucky to have them…. Life is good… the lump is gone
Globally, as of 27 January 2021, there have been 99,638,507 confirmed cases of COVID-19, including 2,141,468 deaths, reported to WHO
I find myself blogging less and less about the pandemic as we are at its one year mark… maybe because I have gotten used to being in my home all the time… maybe because though my heart hurts without my adult children and grandchildren… my heart hurting is starting to feel normal… the vaccine is making its rounds… front line workers first… educators… then the elderly… as it should be… it has not reached me yet. I went to the outside yesterday just to have some routine lab work done and you’d have thought it was an event… rather than 45 minutes outside of my house. I even wore a bra.
But as the sun came up this morning unnoticed behind a grey cloud filled sky I took a trip down memory lane… which for me… with short term memory problems… was quite a bit of magic within itself. I have completed my prep work for Fairy City’s annual emergence. I say prep work… because my trip down memory lane showed me how much more I do once it is out…. who knows what this spring will bring… I do know my San Diego Fairy is coming to set up… and at the moment that is what I look forward to the most… Spring will bring warmer temps… and the return of outside time with my friends and family (and babies!!!) until the vaccine can be widely distributed and I have hope we can put this pandemic to rest finally…
Ode to my San Diego Fairy: guys… this girl… when I got the tumor and had an existential crisis about my new normal… I thought I’d have to give up my shenanigans… I already depend so much on #MrAmazing and my kids to take care of me … this was too much to ask… so this daughter of mine from another mother… and father… said she’d be my legs… she flies herself out here to lil #bountifulutah to put my art out… and to pick it up… and I just couldn’t be anymore grateful #fairycity wouldn’t exist without her and I love her like my own. (And I love my own sooooooo much) and we recycle everything!!
From my Facebook page
I looked at the very first fairy doors I made in 2016 (they can be found with enough research either on this blog or on my insta) it was april… I made six doors just as a random act of kindness and asked someone to be my get away driver… because I didnt know how they would be recieved (thanks fluff!!!) … I ended up doing about 40 doors… some mushrooms… some lady bugs…. that year… I got my first thank you note from kids… and I was hooked… That was the very year I got sick… though we didnt know what it was yet… it certainly was something… and I often painted and hot glued in bed the second year- 2017 -I made my first flowers… I wanted to branch out and gave the Thought Bubble project a trial run… along with about 80 fairy doors here in town… I shipped another 20 or so all over the country… and a few even internationally. In the fall of 2017 I did the arts festival… and the reason box campaign (yes I would classify these as campaigns of kindness) In 2018 (Year 3) the thought bubbles gave way to rocks… as I was constantly trying to get rid of the few remaining pieces that were not biodegradable (the wire, the glaze) 2019 brought those solutions… the project was now fully nontoxic and biodegradable…. This fairy season between year 3 and 4 also brought the Tumor… the Lymphoma… and a Lupus diagnosis.
2020… Rumblings of quarantine were around… but I had prepped my biggest year yet… this was the year of the street signpost… and the opening doors… this was the first year I was going to try to do more to remind people of more than kindness… to do more… and on the first day of quarantine… fairy city emerged… all at once… in a big way… because I couldnt see staging it with all the hope deflating from this planet like a popped balloon. I put out around 100 doors… many tiny games… and small fun items… the fairies joined in the “Black lives matter” movement… and the health initiatives about masks…
It is now 2021- I have a new goal of Upcycling all of my street art… making it from things that were something else before… of having no waste… and still being completely biodegradable and non toxic… I would estimate I am 99% there… I say that though some of the material was bought… it was bought in the pandemic… when businesses needed support… it was given to me as gifts… for my birthday… for christmas… as acts of love and kindness… I consider this an upcycle… as it served 2 purposes…I am six weeks away from the San Diego fairy coming for the great emergence…. This is the year of the Fairy Houses. Im nervous and excited. I hope they find who needs them the most. I hope however they are received they bring joy… and if not… they have brought me much.
Joy even in the pandemic.
Here is to year 6… Happy Birthday Fairy City…. and many more.
and now… to think upon year 7… what shenanigans can I get up to?
Before I go onto my story I would like to mention this pandemic is still raging out of control… but there is hope in the spring… the vaccine is coming.
Globally, as of December 3rd there have been 63,719,213 confirmed cases of COVID-19, including 1,482,084 deaths, reported to WHO.
Worth mentioning however…. this will be my first post since the beginning of this thing that is not about this thing…. maybe with hope is coming some healing.
At first, When I became sick… I felt like my life was falling apart… doctors suggested it was stress… and thanks to Mr. Amazing I was finally to a point in my life that I could stop being the breadwinner and live a bit more simply…. So I left my big world traveling career… and with a book in mind… that a publisher friend whom I’d sent the synopsis to had already shown interest in… I left… I wrote the book… It won top mentions in writing circles… I never even submitted it for publication… because I wasn’t happy with it… and didn’t want to put the work into it that it would require to become great… Don’t get me wrong… I have it… and I will one day… when the wind blows me that way.
Hold on tight… The wind blows me all over the place in this back story to my super hero life.
Out of nowhere… I began to paint… Yep paint… Id dabbled here and there… but when you make a list of things you can do to be mindful and release stress… Travel (I did this quite a bit as well) … Painting…. etc… you get the idea… Infact ALL of this is captured in the posts of this blog.
Well guys… I’m a worker bee… a real over achiever… and I have been working my entire life…. So soon my home was overflowing with Paintings… everyones room had them… my friends had them… and soon my street art project was born (Fairy City- Search it)
During this time I contracted for a while… doing the same type of work as I had in my career… but part time… two years in fact I did this… and regardless of what happened with that… I feel like we were wildly successful.
But I was getting sicker… sneaking into the office early to disinfect everything I had touched because I had strep… or pink eye…. or whatever else happen to be the case at the time… and the sicker I became the angrier I became…contracting ended and I did an art show (like hurricane force wind changes)
I knew until I got healthy I was never going to be able to work like I had before… so that became my focus… I applied for a job at the state… not for the pay… but for the benefits…. but in order to work… I knew it was going to have to be something I believed in… So I headed to education… because I had at this point figured out I was a superhero of the streets (again… Fairy City LOL) but I needed to feel good about my daytime work as well… how could I affect the change in the world I wanted to see? Education. But, I needed no stress… and nothing hanging on me incase I disappeared due to whatever invisible thing was trying to kill me. So I landed a job as Executive Secretary in the EXACT right place… my disguise was almost complete…. add a couple tumors… some lymphoma…. chemo drugs… oh and kill the hamstring. PERFECT! No one would ever suspect who I really was… including myself.
Pause for a moment:
I HATE THE WORD SECRETARY- I HATE IT… yet, I applied for it… and loathed it even more. I have a degree… my mind is brilliant! unless I am forgetting simple words… or have brain fog… it works a thousand times better than my body at this point… and it works fast… it thinks of new ways to do things… better ways… it thinks out of the box! It gets shit done guys! My pride became my nemesis… My ego was mountain high… and it wasn’t okay with this new title. I had a lot of work to do on it…. and luckily as I went from hospital bed… to cane…. to wheelchair… back to walking sticks… I had the time to do so.
Story Continued: Job openings have been posted… and my DREAM job was one of them… a director position in Equity…. The REAL ability to put all those ideas and words I painted on fairy doors into action. I had the qualifications… and the reputation in the building (or so my ego, coworkers, and husband tells me) … and I stopped short … I have an autoimmune disease… I am barely hanging on sometimes… I have to lay down after I shower…
How could I maintain any kind of ethical integrity and apply for that job knowing I am no longer able to do it… Knowing that walking into a campus is all the walking I can do for a day… and suddenly… I didn’t hate the word Secretary any more… Most people with my diagnosis would be on disability… I am a force to be reckoned with… one these diseases have not faced before… I AM THE SECRETARY!!! I am affecting as much change in this world as I am able… and a bit more… and that is good enough….
Moral of this story? Sometimes the phrase “It is good enough” is literal… I am good enough.
Globally, as of, 18 September 2020, there have been 30,055,710 confirmed cases of COVID-19, including 943,433 deaths, reported to WHO.
The 13th of September was one of those days…. My son… my only birth child … informed his beautiful fiancé that his mom wouldn’t wear a dress to their wedding… he was just helping her with expectations… so I bought a formal gown… cause I can… but they never mentioned shoes??
They had the most touching wedding – outside- under a glaring sun…. the attendees were mostly in their wedding party… there were less than 10 more in the audience… Pandemic
and then we danced… like our souls and lives depended on it… it was magical
Then I spent the next day (My 47th Birthday) sitting/ laying on ice… thanks tumor leg… LOL
And now we quarantine… incase we were not careful enough… incase we got the virus … so we do not spread it… and the timing is good… because we are at the start of the second wave… and the prediction models make the first one look like a practice one…. Also- We get flu shots… because you can have two viruses at once… how would you ever survive that?
From the Salt Lake Tribune on this day!!!on Juneteenth friends!!! Here!! Its like a dream to me!!
So I cannot march… we are still in a pandemic… so instead I painted… donated… and then donated my painting… They will carry it on their March in my tiny town for me.
These were the iconic protest signs from each of these incidents… there are thousands more to be named… I chose the ones that I had nightmares about.
There is A LOT going on!!! What a time to be alive!! and I am alive!!!
Update on the ongoing novel Corona virus- Covid-19
Total (new cases in last 24 hours) (6/17/2020) Globally 8 061 550 cases (119 759) 440 290 deaths (5 494)
There is hope still… antibodies are being worked on… so are vaccines… the mask war is similar to the BlackLivesMatter debates… and I have kind of noticed the non mask people tend to be non movement people as well… not a blanket statement at all! it is not true for all… but It does point out that the media of our choosing does feed information differently. I am Pro Movement – and I wear a mask EVERY SINGLE TIME. I painted the virus also… painting is how I process… it is how I take my feelings and put them on the outside… organize them… and share them….
I finished this as May 2020 was finishing
Speaking of alive now that I have chased off those who left due to my stance… here are notes from my Doctors visit this Monday..
PE stands for Patient Exam… and yes my friends… it is tumor time again
But… I am alive… and so full of hope! It is small… and to quote the doctor “It is most likely benign again… but we will check… we are going to get it out and check”
I’m sure you realize this if you remember my last tumor and its painting… I have a TON of feelings… hence the street art project… ha ha!
I love you guys… mostly my kids (WHO I AM SO PROUD OF) but sincerely I love you… if you are thinking how can I love you… I may not even know you… well simple… if people can hate for no reason… then I can love.
Stay safe, Stay well, I am still alive… and plan to stay that way.
According to the National Museum of the American Indian The winter solstice begins a season of storytelling and ceremony… I would like to spend a few minutes of this solstice wrapping up my unfinished story… and begin on a fresh page… my new story. (and after you read that, I really do recommend reading the article from the Smithsonian above… its kind of amazingly perfect)
But if you have been following along these sporadic… every 60 to 90 days postings… I believe I left you here…
I blogged about the tumor arriving two days after they removed it… I blogged about it being the size of a grapefruit or softball… before my post op check… and before pathology… and before anyone told me the doctors had kept me in surgery two hours longer than anticipated… Darth Lumpious was 13.5 centimeters… It was an eggplant not a grapefruit… and then pathology came back, although as predicted… it was benign.
Recovery did not go quite as expected…. obviously a tumor that large left a very deep (Multiple tissue layers sliced and stitched) very large gap in my leg… it also has permanently atrophied my hamstring and nerves… My skin did not grow and heal like one would expect… staples stayed in twice as long as normal… my body never began to heal and push them out… so we removed them… and began wound treatment….
This bloody mess of a bathroom was after the initial clean up after returning from the ER… and when I finally decided that I needed a photo… This is all that was left… but I lost over a gallon of blood that had collected in the gap left… and filled and filled until it burst through the incision and all over my house… car…. husband… and ER…. RIP Towels Bathroom rugs and Clothes lost in the massacre. (FTW Cat Litter Absorbs Blood!!!) So here I am, almost 90 days out from surgery, and the initial incision is healed… still working on the under layers of tissue (Sutures are still there)… I will walk with a cane the rest of my life…. anything longer than a city block… and to be honest… more than that some days if it is cold… or I pushed too hard … I was angry about this at first… but then someone reached out to me… offered me a loved ones cane… left behind when he left the earth. Suddenly I understood using a cane was a privilege… and I gratefully accepted it.
Thank you Rhonda
No Leukemia, Tumor Benign, Left with no other diagnosis… I was finally given a diagnosis of Negative ANA Lupus. Which if you have watched House MD, you will find as much comfort in this as I do…. Bahahahahaha… Of the 11 markers of Lupus, I have 5… but not the Positive ANA 98% of Lupus patients have… So rheumatology is where I am headed… and I am sure they will be able to help me… My fever of unknown origin has been back for a several months… and is now manifesting a new symptom… I am unable to regulate my body temperature…
And during all of this life moved forward…. I manage my desk job… Mr Amazing runs the house… Cooks… Shops…. Covers me in blankets and removes my boots… To the moon and back doesn’t adequately describe my love for him…. It is the size of the Universe!!!
The Shit he does for me LMAO!!!
Tall child had a birthday party that will go down in history… Christmas has come…
Cutest Modge Podge family of love not blood that ever was.
Where all fairies go in the winter.Even a little Christmas Magic occurred.
I have lost some friends…. memory… and ability.
But I have gained so much (yes… weight as well)
I am so grateful to be alive… I am so very grateful for my Talls, Smalls and Tinies… I have friends that never left… even when I forgot about them. (I forget everything currently in case you are wondering… I’ve had to scroll back to the top of this at least five times to see what I have written) … I do not know what I did in my life to deserve all of this… but it must have been good.
Oh… Did you really read this all the way to the end??? You get to see the CUTEST KITTEN ON THE PLANET THEN!!!
Have you ever asked your child not to talk back… ever answered the petulant “don’t care” with… then you wont care if I throw this toy away… how many times have you said “don’t you tell me no!” …. Usually it is the parent that has to come up with creative ways to make these conversations take a constructive turn and try to instill respect for others balanced with enough self respect to speak your mind and value your own feelings. Not me, Not with my son… after several of these run ins…at the expected ages of somewhere in between 2 and 3ish … one day I softly tell my son… again… that while it is okay to feel anger, it is not okay to express it in such a way that would send a buzz light year action figure sailing through the air at his teen aged hormone enraged sister, who is really too old to be drawn into this pissing match by a toddler… but that is another entry…. His entire face turned red in frustration… his lower lip was shaking knowing he was in control of this ending in a simple time out… or turning into a full fledged meltdown whilst said sister watched with a satisfied smirk… and in that moment I watched that tiny lil cherub face skewed into a demonic expression as he has this battle of wills… I wondered if he was literally biting his tongue to keep from speaking… I had always wondered if that was just an expression… when he whispered the word “smiffbib”… what? i said? I hadn’t understood him… oh wait… because it made no sense and I had never heard this before… “Smiffbib” he said more clearly… “is that all you have to say for yourself?” I asked… puzzled… but impressed that he hadn’t screamed no… or thrown his little body on the floor in a seizure like spasm… “Yes.. that’s it… Smiffbib” and he smiled as he walked over to serve his time out sentence… I knew then… that he had won… I wasn’t sure at what yet.. I mean.. he was doing his time out… he was not spewing hate at his sister… or myself as sometimes toddlers do… He was quietly sitting in timeout for his three minutes and not making a dive for that god forsaken buzz light year that he has been dragging around since birth to save it from being taken away for the rest of the day…. but clearly from his actions…. he was sure he had won…. I have the clarity of mind to take this out he has given me.. and let it go… turning on the sister to remind her she is the older one… and to act like it… and leave the room to finish dishes before the drawn out whine of ” bbbbuuuuutttt Moooommmmmm” has finished escaping her mouth… And completely forget the incident…. MY son however did not…. A few weeks later I am telling him through an exhausted haze my practiced speech of if he doesn’t get out of the bathtub he will catch a cold… all the heat is clearly gone from the water… it is colder than room temperature… and I am holding a towel open for him to come to wrap in and get warm… when he says it again… “Smiffbib”….. What? this time I smile… so the first time wasn’t an accident… I was right… He had concocted something I couldn’t yet understand…. Do you want to catch a cold and go to the doctor? “Smiffbib mom”…. “Son”… exasperated… “don’t make me count”… He doesn’t, he rarely does… he is an extraordinarily well behaved child… we joke about it … its actually a little terrifying… He has never pushed a child in line for the slide… taken a toy from another child… hit … bit…. spit… nothing… the only time he resembles what you would expect from a happy healthy little rascal is all reserved for his sister… who he worships… and follows… and cries for.. and laughs for.. and loves more than I ever thought possible…. She taught him to write his name as a surprise for me… they worked on it for weeks… his name has 18 letters… they sing a song about everything… when they walk around the block together and I have the windows open I can hear them coming… Singing in a war cry kind of march… “Were almost home… Were almost home”! .. They build forts… they play games… They are not both from my womb… but they don’t act like it… and as crazy as a teen can drive a young mother… her relationship with him saves her life more than once …. Smiffbib became a house hold word… it spread from my vocabulary to that of my friends… making several Facebook status updates… It made me angry several times when it was a brush with danger that was met with that response… and made me giggle when overheard in play… Ive heard it given in advice …. “Sometimes you just have to say Smiffbib”… I hear told to another that is worried about what people think about her…. And one time it made me cry… after his surgery… when they took out the tumor… and I was rubbing vitamin E on his little incision in his five year old crook of his neck… “Does that hurt angel boy? I’m so sorry” he was cringing… “Smiffbib”…. It gets retired sometimes… for a year or two… He is highly offended when he hears others use it… It belongs to him … Until the day we bought the domain… He is twelve now… and intends to get it in Webster’s dictionary… Smiffbib has several meanings… it means No, I don’t care, you cant make me, I feel sorry for myself, I have too much pride, This argument is over, I’m at the end of my rope, but what it really means… is I may have to conform… You may think you can domesticate me like some kind of wild animal… and you can force me to behave.. and teach me these rules that I will not break… but you can’t kill my individuality… you can’t squash my spirit… Smiffbib…. The socially acceptable “Fuck you”.
