Myeloma Update

The girls went to Johns Hopkins with me this time, and somehow I remembered these things much more painful during the process, but it is actually áfter’ a bone marrow biopsy to your hip that you ‘really’ feel what they did back there.

I have attached a photo for people with my humor.

They did not let the girls come back to the procedure room, so I had to improvise on the photography. You are welcome.

Anyway, I survived, but did not see my doctor that day, nor did I see him for the follow up, due to another schedule conflict. No news, or no calls from your oncologist after this procedure is always a good thing. It did not necessarily say there is No cancer in my body, but it did say that it is undetectable, therefore I am still in remission, and it is showing signs of being more of a plasma cell myeloma, which maybe? Is why I managed to stick around past the original doctors diagnosis? I keep the tumors away… the cancer doesn’t have any chance taking me down. Easy Peasy, Lemon-Squeezy is what I say. Anyway, all my tests look really good for what my body has been through in the last 5 years. Praise God is all I can say. There has been nothing but glorious… nothing happening in the myeloma world, I get to pretend I never met the beast most of the time. 🙂

I try to work on de-stressing, by staying busy, and attempting to live as if cancer never showed up in the first place, and I am only here to live every day to the fullest. Do not research myeloma excessively, do not ask too many questions about every ache and pain, you will find more aches and pains the harder you look, I am an example. Myeloma messes with our state of mind, our well-being some days.

The next plan on the agenda is to go back to Art School and start doing more creative projects to process all the life changes in a more therapeutic way than my usual ‘stream of consciousness’ style of writing I have done for the last several years. As I tidy up the baggage in my soul for a while longer, and clean out the clutter, I will try to at least make small updates before attempting any more long & slightly terrible blog thus far… although therapeutic, it can be done =better.

I’ve been thinking lately…

Like every 44 year old woman… I secretly love rap music (haha)… Welcome to my mind.  When OCD/ADHD shows up – I start listening and exercising, doing yard work, cleaning house and this prompts deep thoughts. Much of my present day life is spent isolating for hours at a time just to think about what to do next. I have been suspect (more than usual) of the Bible’s content – since I studied Environmental History and Women Studies last year. Last night I decided to dig out a 26-year-old Bible that was given to me as a gift by the first man to propose to me at age 18. No clue where this man is now…

Without fail, I open to a passage, and something hits me deep (much like an 8 ball answering a question with no definitive answer, I have to keep mentioning – not to be disrespectful, just an observation at times, reminds me I control my mind’s eye, but if I don’t control it, it will do its own thing without me).  But for God’s sake, remember humans wrote that book from their experience and perspective and it was passed on … years, which should leave some room for us to question and make logical conclusions (in my opinion), (maybe it should have a warning label like coffee cups at McDonald’s) some folks take everything out of context and run out stoning people. *crazy thinking? Sorry… not sorry. Anyway, this often leads me to other rabbit trails of thought that are surprisingly… inexplicably helpful…. I should have joined a spiritual convent decades ago; but I would have none of these interesting stories to tell. haha

This book is tattered, highlighted, and torn in places, but I cannot bring myself to let go of a book I carried through the most spiritually formative years of my life, for me, the book has power because of my belief in it. I am going to compile a list of all the scriptures as super cool ‘truth-fortune-cookies-. I will call them “Bless your heart,” cookies…

Motherhood

*My 3 day roadtrip to Mississippi was an emotional energy rollercoaster that stayed inside my body 3 days prior, until maybe 3 days after.  *now compute that.   – My best friend rode along to make sure I did not snooze at the wheel, and… did not over-react like a crazy mom (externally). I neglected to factor ‘sleep’ into the trip equation, so I was unable to make all the visits I hoped for.  I attempted ‘restful sleep’ most of the week, in between appointments, without success.

My temporary insomnia meant, I finished “Big Little Lies” on HBO – and the series wrecked me a little. I would have avoided it a decade ago, because I would have been unable to see past the heavy subject matter to enjoy the acting, filmography, pacing… blah blah blah.

None of us really see things as they are; we see them as We Are. —  Big Little Lies.  This is true… I mean, this is the core of human happiness or suffering (at least mine).  How do we see ourselves? Good or bad? Can we think of positive outcomes to our situation?  Do we believe we have intrinsic value and purpose when we suffer for a belief?

For the past year, I have been kind of isolated socially, attempting to figure things out I guess…   Lack of sleep + stress + mini panic attacks = exhaustion… Or (fretting? Mood swings?).  I get intrusive ‘thought trains’ running through my head: my mortality (see oncologist for bone marrow biopsy on July 2), the daughters health & future, a touch of temporary loneliness, anxiety rehashing family conversations in my head to fill silences… questioning why my universe is upside down, if others is right-side up?  Or my shame over time, money and effort spent pursuing lofty goals… How was I able to lie to myself for so long?  What if This, or What If, That… Classy AF Brigitte Jones-Diary scene with tears, singing and bad driving – American-style… Surely, awkwardly painful epiphanies would irritate most people, but my bestie never gets mad or impatient.  (I get in patient with myself).  She reminds me of a hiker in the woods that instinctively knows to be very quiet (to avoid bear attacks) in those moments.

I come from a family tree where most of the branches have cut themselves off and re-planted themselves in better soil in order to thrive.  In the past especially, my lack of ‘helpful’ communication skills or how to navigate conflict did not help me reconnect.  (However, I get all the feels and the words inside my head, regardless).

My irrational words poured out, but she only had to say a few words to bring me back.  I think she deserves a medal for her patience when I am losing my @#$%…   sometimes, life gets heavy when your teenagers outnumber you.  To have this diagnosis of cancer hanging over my head, but being in remission feels like I am in a boat in the middle of an ocean, nobody is sinking at the moment, but I am still waiting for the next storm, unable to rest.

Motherhood IS hard from my perspective… ‘feels’ – body and soul intertwined with 3 others. I wonder if the mom position is appreciated enough, beyond the holiday shout-outs, memes, or media mom characters.  I can attest to the fact that this mother-psyche-emoting-condition is partly conscious and unconscious… A mom can choose to numb the connections, but they never go away, and they always catch up to you.  Imagine, feeling something, or deciding a ‘thing’ is something you would ‘rather would’ choose to feel again… A mother will most likely get to ‘re-visit’ whatever positive or negative emotion from her past, with an opportunity to change, accept, hurt, or wrestle with a feeling/memory until she truly understands a lesson of some kind, no matter how benign.

I find simple life experiences intensely painful.  Without going through the tough experiences, I would not learn new ways to be better. This helps in living in the ‘now’, not could have, or should have been.  My internal struggle relates to the fact that I had little maturity or self-awareness before I had children, leaving me in a position where kids outgrew my level of experience.  (yes, I realize I am not unique, but I felt I was in this instance).   As a mom, I made assumptions, that my children deserved any-one-other than me.  I reinforced a learned belief when I walked in and became mentally/physically trapped in situations that only reinforced what I already believed for too long.  I lied to myself to survive and  became unrecognizable to the people that I thought would never forget.  Now I can see life as it is, not what I – hoped it could have been – in the grand scheme of things, things are pretty good.

So, Now What?

“Why am I still here?” To be here – Add some health related issues… extreme adversity and you can really experience – Life… I was diagnosed with Multiple Myeloma at age 37, given 3-5 years, 5-7 years, and now at 44, and off chemo and in a remission – also told not to ever expect that. Not Giving the cancer extra attention serves me best.

I have been a spiritual person for as long as I can remember,  the Re-Education of Christina has been a slow process.  Cannot control what happens, but can control what I do with the excessive-energy – left over from surviving.  In the past, the Red Letter portion of the Bible provided me much comfort, when I was looking for answers to the ‘unanswerable’ questions that arise during traumatic events.  The bible can also be a good source for shaming or punishing myself (inadvertently). I still have much to learn about harsh realities and the corresponding verse solutions.  Not dogging the Bible, just to clarify.

I need to be honest with myself and others to share experiences and hope to inspire others to keep fighting for a better life. Fear, shame, guilt, and insecurity were emotions that ruled the greater part of my life (even still). I had to go through a series of extreme events and come through on the other side, before growing the lady ‘ball’s to share stories. Maybe a cautionary tale, but also something that I can now see positively… and it strangely makes sense.  I earned the title of Wonder Woman, but it took a long time to come to this belief.

I see myself as a woman that took on several responsibilities that were not hers, but through faith in a Creator and her strength of will… was able to make it through… yet, until recently I could not see – except to tell myself

I was “missing The Mark”. I believed I did nothing of value (because it was not close to anything imagined). I finally stopped living with a narrative that no longer served me, and honestly … when I read anything I wrote in the past (yes, I realize it has not been that long), it is still difficult to recognize that woman and not pity her.

Sometimes we can all think we are ‘completely ‘fine’ but still keep living under intense life stressors… We look around, people are on life’s hamster wheel or LIFE’S big highway, going someplace new. Once I stopped running in whatever direction I ‘believed’ was the ‘right direction, I could appreciate the ground on which I stood.  Every day, focus on now, and ask – What needs to be done? What can be done?  Many times I begged God to remove circumstances, or lesson the pain, or to remove me, but the answer I  always got was Nope. Can’t Quit… You SURVIVED, sorry, your story is not finished.  The past is gone, thank goodness for that, I needed to let it go a long time ago. I have been out of circulation online for a long time, but feel it is time to start sharing some funny, albeit; depending on your perspective, sad stories. I hope folks will stay tuned, I can promise I will not write as much as I have in the past, but I do have things to say (shocker)… and for once, will not be talking out of my ass.

Take a Ride with me…

 I carry around a backpack that doubles as a family records filing cabinet.  Most days you can find me in a lobby waiting at any point.  I have time to learn a lot about myself and my children in all this ‘down-time’.  If a child is struggling with depression aggravated by an all-consuming-Eating Disorder… parents/caregivers are left standing in a wasteland of incorrect information, and often standing alone.

Specialists are there to give you folders and binders full of education on the disease… add family therapy, and parent support groups and some are able to convince their children to believe they can trust the process.  The message is: choose Recovery… Eat, Please? Giving to the physical body nutritionally should make them feel better than whatever relief the starvation OR self-harm may temporarily give.   It should be SCIENCE…. and guess what these kids do?  Flip the middle finger in the face of Science, every single day.  To these boys and girls, Eating, is not a form of nourishment, it is considered a form of torture or punishment.

Looking at hospital stats… the success rate of ED recovery is low.  You check your child into these facilities they will most likely be in a holding pattern until you can find hopefully, a better solution.  The idea is to change the direction of which a life has started to head horribly off course.  Once a child gets entrenched in some types of disordered behaviors, it ‘quite literally’ feels near-impossible to reverse.  The options are CBT, EMDR, ECT, DBT…. grasping attempts at every letter of the alphabet.   All you need to have is energy, money, and enough hope to keep grasping at the sands of time as it falls through your hands.  What then happens, the kids just dig in their heals, learn new bad behaviors, they get physically healthy, you bring them back home, and the process restarts.  Not unlike the recovery process with a drug addiction.

Dear Insecurity a little song my daughter shared with me.

Time has become a foreign concept to me.   I often forget what day of the week it is …

Merry Christmas?

Not so much.  But let us walk down a nostalgic lane for about 2 minutes…

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Imagine some “metaphoric” moments in my life with me… the elf is aka ‘life’ tells me:  “This is whatcha get, move along, there are more kids behind you” and shoves me up the stairs a tad, as I freeze, knowing what I need to say, but choking when asked: “What do you want little girl?”… landing in some cool & not so cool churches… with teachings in self-sacrifice, 💭 daydreamer me: we get what we deserve, Elf: ‘Shut it, kid’.  Me/Ralphie:  this highly sensitive, deep thinking, spiritually unsettled kid with high hopes and dreams. In this Christmas Story, Santa is God or the Universe (metaphorically).

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Anyhow, as far back as I can remember…  I think I used to “think” I knew” – Right vs Wrong, and I believed would always choose Right (given a choice). If I could not control my vulnerability to assert myself and make myself more “tolerable” as a personality as I got older – I would find a way to use my cautionary tale life 😉 to benefit others.

Ralphie:…  I want an Official Red Ryder Carbine-Action Two-Hundred-Shot Range Model Air Rifle! Santa Claus: You’ll shoot your eye out, kid. Santa Claus: [Santa pushes Ralphie down the slide with his boot] Merry Christmas. Ho!Ho!Ho!   {slides down ‘dumb-founded’}

Back to reality, awaken to Life kicking us in the teeth, per the usual, we laugh at ourselves 24/7, because it makes it all less Real (we almost die)… Then dig in, pray, hope to Affirm our purposeful requests to our Creator … – But the requests or decisions we make, harm us, and Life kicks us – down the tunnel …we slide – even farther behind than we started… ironically, the climb to the top starts all over.  *Classic Pun*

I have been out of touch with most people since October 2017. This post may have sad undertones, but not completely sad, just not ‘feeling’ much Christmas Spirit this year.  I grieve for multiple things… and merely needed to punctuate how I felt this Christmas Eve-Eve, and how blessed I am to be in a position to look back at my life and ‘some’ of the pain in becoming UnBreakable.  Making slow changes… or rapid depending on your vantage point, but I am thankful for the inner strength to pick up and begin again.

Grief

Ever have A DAY that changes YOUR life in a way that you did not feel possible?  Ever have more than one?  Quite disorienting.  Please forgive the sad tone… it has been a day, of a sequence of days….  I am unsure of who reads my words or if they make any difference in the grand scheme of life.   To feel this profound loss – but simultaneous peace?   I know in my heart that the child my friend lost is not gone completely (in my opinion), because I believe she is inside of every person she loved and I believe her soul is at peace.

I wanted to write because my heart hurts so much for my friend, losing her Angel.  Her child helped her grow into the amazing and resilient woman/mother/friend she is today.  She was a spirited girl that learned how to survive in the harshest climates of all… “Suburban American Public School”, and to be different in school, these days.  She held her head up, battled jerks, bullies, terrible humans, all the while battling chronic pain, chronic discomfort, hair loss, vision issues, stomach issues, an entire human condition in a tiny girls body, and STILL found a way to smile and PLAY and be kind to her friends and boyfriend.  She taught us all lessons every day and we did not know it was happening.   Her friends will tell you… She was capable of much more than even she knew.

At around 2 am this morning, I finished talking with my daughter, and I realized in an instant how much I still MISSED in the every day business of living… with all my worrying about the past and the future of our lives… She shared with me how T-bird was there with her during the most hard days of her life.  She told me how her spirit made her feel calm, and how all she wanted was to love her and be her big sister.  She had plans to get better at ‘adulting’ together, with their moms not ‘too far away’ in case of emergency.  She told me that she held her when she was scared, always lifted her up and made her laugh, but she knew she was very sad and always hurting.  She said she feels she will never be the same.  Another daughter remembers playing as kids as far back as she can remember.  Summer 2016 was overwhelming an painful for everyone.  Even when t-bird and her brother visited us, she could sit with the girls in silence and be happy as clams, like sisters, just easy, no stress, no mess.

I regret missed moments, and making assumptions about our kids behaviors, and the WHOLE time, the kids were connecting, sharing and supporting one another.  I have always known that kids can change the world, if adults would just let them speak.  If we could all attempt to truly listen in this world full of noise and distractions. Try not telling others what to think… let them talk – They just might surprise you… they are just resilient and so insightful.  I guess that is all I can say for now on that.

…wish I was kidding

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