Still Learning

I started a new job last week. It would be an understatement to say it has been challenging – yet also rewarding. The elderly population (in my opinion) are the most misunderstood & forgotten groups of humans. I do not think family members realize the conditions in which their love ones reside – when not in their care. Even in the best of facilities – with the best of education and training provided – something as simple as “not having enough care staff” can make all the difference in the quality of care you are able to provide.

I am not naive, and I realize that my empathy regarding others far outweighs my capacity to change circumstances immediately. This often makes me feel powerless – but I can only imagine the helplessness of the individual who communicates to me and their help does not arrive in a timely manner. I do not have the power to help with immediate ‘physical needs’ because rules stipulate I am to anticipate other needs – through activities, recreation, entertainment, or personal engagement. These exceptional human beings have survived almost 100 years, and have had the unfortunate circumstance of losing their cognitive and physical abilities, and are at the mercy of those willing to take the time to get to know them and treat them with respect and dignity. In a perfect world, your care-giver will treat you as they would wish to be treated, but we do not live in a perfect world. In fact, it is very imperfect, and something as simple as being allowed to use the restroom when you need to is taken away from you. (This is an unacceptable and avoidable circumstance).

I have been challenged emotionally and spiritually this week – and have decided I will do whatever is in my power to help whomever I come in contact with. I was called into ministry as a teenager, and that call never left. I have tried so many different things in my life to redirect my focus and find another purpose. If I was chosen for anything – or if my life is predestined to be something… it would have to be care-giving because it comes as natural as breathing. One thing I struggle with is pacing myself, because I will work myself to exhaustion and not realize I am doing it. I do not say things to lift myself up or say I am a better human than most Because I care so much about the most marginalized groups of people on a regular basis. I am passionate about young and old people alike, but the ones I am drawn to at this point in my life happen to resemble the grandparents I was unable to help when I was younger.

I just wish people would realize that aging is a situation we will ALL face someday, and we will ALL wish to have someone who is willing to take the time to look us in the eyes and figure out what we are trying to communicate and be willing to meet our needs when we cannot meet those needs ourselves. Quality human care should be a top priority in all societies. Our society has a way of putting troubled youth away in orphanages or homes, and cognitively and physically disabled older individuals in facilities and trusting their needs are being met. It is ironic that the world can obsess over a babies security and comfort – while forgetting that life has a way of running full circle when we age. Sometimes the simplest… kindest course of action is all that is needed, yet most people do not take the time to do this.

I always wondered what my life was going to be when I grew up… I was uncertain of the direction I was going to until now. I have survived what may seem like the worst circumstances -However – I can see I am greatly blessed. I know I am here for a reason, and at the risk of sounding like a crazy church lady, I can say God had a hand at putting me in this place at this point in time because there is much work to do. My hope is I will be able to encourage others to volunteer their time with these individuals in the future.

Life Happens…

I was sitting here scrolling through my postings and I realized that I seem to have the ability to STOP long enough every 6 months or so and I write some long diatribe of a life-events blog. I am learning that this is an ineffective way to communicate life as it has gone since Multiple Myeloma.

What we need is an accurate snapshot of a day in this life on any given day, or any given week. I should post within a day of the event – not six months later because the events change before I even type them. For instance: Kim had her Prom, it was great, she graduates high school in a week, and will be moving to Savannah, Georgia by Sept. 8. That is a big deal, many emotions. Kat is in rehab, another big deal with emotions, and Court is now a Dental Hygienist, super impressed and completely blown away by my daughters. I am blessed, even when it feels painful, at least I am here.

I can legitimately say that SOMETHING happens, or changes, or shifts in some way every single week of my life. (much like all humans). What I am saying is, I do not have to write a novel each time I post – once I learn how not to take as long to say it.

If I were to report the number of changes, it would require me to ask my therapist for her ‘transcripts’, without those, who knows how I could quantify the passage of time in a way that makes sense to myself. Time either goes too fast or entirely too slow, never quite seems to be a happy medium to settle in with. I talk about this, because it is very difficult to be ‘present’ in a moment, when some moments need to end but do not, and some that I need to slow down, – speed up beyond my grasp.- Here, this makes me want to question? Why is this?

Side note: I have started a 21 day challenge that involves strength training and body conditioning. I do this because I want to live better and longer. I recognize that it is insane for me to do this, (with the whole spine fusion thing) but at the same time, I need to make some changes and I lack patience and partner to motivate me. I recognize that in order to be physically healthy, I also need to be emotionally and spiritually healthy. This challenge is something I am speaking aloud to hold myself accountable to the actions I am taking. I have chosen to trust and support those who help me reach the ever-changing goals I present. This is my version of a short and sweet nonsensical blog, not too many words?

Hope also Hurts

Deciding to look back at the last 6 years living in Maryland, um… Is this a good idea? How about just a little further back two years and I am in Mississippi? Back when I 100% believed I was dying soon. I have learned something very fundamental and feel compelled to share – although only 5 readers will have the patience to read my words. Much has happened. Good and Bad. Yet, I am guilty of being the ‘eternal optimist’.

Making a conscious action to believe in something greater than myself, but also truly having hope that when things get bad there is always the idea that things MUST change and eventually WILL get better. It seems that if I dared to think contrary, I would not have survived 2 months of solitary cancer treatment separated from my children in 2013. If you go into a battle thinking you are going to lose… why would you even fight? Here I am alive in 2022. That is just my opinion. I may have gotten everything I asked for when I prayed, but I was not asking for much …I assumed someone better than me would step into my children lives and they would be better without me fumbling it all up. – I was just asking to be alive long enough to help them make it through high school. I honestly never thought of plans beyond surviving this long. I got more than that, and should learn to appreciate it. Alas, it is a fact of my flawed existence. The good thing is, I do have goals and dreams – even still.

However, I have learned something about this block of time specifically. My choice to be myself, my choice to believe in something greater, my choice to step out in faith even when the situation seemed absurd or impossible… ran the risk of hurting me and my kids in the process. The process of ‘becoming’ whatever it is that I am to become. One thing I have taught my girls, find ‘your path’ before you join ‘someone else’s path’, before you know who ‘you’ are. It has been difficult to separate myself as an adult woman with goals and dreams from the mother since 1997. I think that is why I have spent so much time looking back on the 1990s, because it sometimes feels like a dream to imagine who I was before the experiences I have had.

Also a cold hard fact… all the hope in the world or all the faith in the world may not change circumstances in a timeframe that will actually feel comfortable. In fact, choosing Hope in the face of other evidence… also Hurts.

Shake it off: CoVid19

It has been almost seven months since my last blog. I can sum up: Covid + Stress mismanaged = No peace or joy and isolation saps energy, too much netflix = losing blocks of time and disconnection from other humans. I have had some good months and do enjoy days with my kids and sometimes even enjoy being at work, but for the last couple of months I have been lacking inspiration and motivation to see ‘beyond’ the stress. The girls and me have all been vaccinated and I have been boosted, but we all still got sick anyway. We have heard of many who have died due to complications. I am very grateful that the symptoms for me were mild in comparison to so many others. We spent almost two weeks after Christmas just laying in bed. It gave me time to ‘overthink’ and change my perspective. I am determined to hold onto this remission for as long as I can. I have a PET Scan scheduled in March, that is when I will decide to research and worry a little, but until then, I am going to be happy that my doctor has not contacted me to tell me why my blood work and test results were not positive, it has just been left as a question mark and the anticipation of the scan to either RESOLVE my stress by telling me I have no tumors, or REV UP my stress by telling me there is something happening that I cannot see…. What would you do? I just avoid thinking about it. I have plenty more to worry on.

I have been talking to an old friend from the old days the 1990’s, still living in south Mississippi. It was an amazing first conversation after 25 years, but it was easy, and lasted for a couple of hours the first time. So many of the people I went to school with or did mission work with have become pastors or ministers in their own lives. I guess I needed a sign that I was not alone or forgotten as a friend, am not the only one struggling, and still have a purpose for living this life. It is hard to hear a man of faith pray over me after all these years of avoiding the church, but it opened up something in my heart and spirit that I needed, so I am not going to disparage the experience – even if it is harder for me the hear God than it was when I was a young adult. He even got me to start reading my bible daily again, and it has definitely taken on a different tone. So far we have had several deep – also hilarious conversations since Thanksgiving about his life as a husband, father, pastor, black man in the Deep South + life during CoVid and being related to people that do not believe in vaccinating and how we are both Conservative-Liberals or some political hybrid that does not exist – and my diverse experiences all over the United States since I left Mississippi and joined the Air Force as a young, naive, god-fearing white girl to now working for a Maryland Historical Society and selling Civil War history books. He has challenged me and given me a lot to think about as I navigate life when it seems impossible to understand at times. *thanks Willie Jefferson*

Today I started reading a book called “Stop Overthinking.”

“The first thing you need to remember is a mantra called the 4 A’s of stress management. These are avoid, alter, accept, and adapt. Avoiding things entails simply walking away from things you can’t control. Some things are simply not worth the effort and are best removed from our environments.” – Nick Trenton

Anywho… This blog is not meant to be a downer. Please understand, I know I write every couple of months, and there always seems to be multiple changes to report because TEENAGERS and Young Adults change their minds CONSTANTLY, and it is impossible to keep up . Life is actually moving ahead as planned. K. has officially registered for school at the Savannah College of Art and Design and will be moving into the dorms in Georgia after she graduates June 2022… (much planning is still being done) My youngest is going to graduate high school! I prayed that I would survive long enough for all three to graduate high school… (I didn’t think I would survive till college and here I am!) This is something I am excited and stressed about all at the same time. She has worked very hard to build her portfolio, write her essays, the extracurriculars (she actually likes high school), and has fully participated in her own future plans on her own. All of my girls have drive to work hard and I am proud of her – although I will be sad to live so far away. I am beyond excited about this new chapter in her life, and hope and pray I will at the very least be her far away supporter as she spreads her wings. She even asked if she could join me down at the gym because she said “my friends all work out and I think it would be good”. Secretly I am jumping for joy, I love working out. It has really encouraged me to re-evaluate my own future plans and motivates me to be better.

K. has finally decided on seeking her Bachelors in Creative Writing through Southern New Hampshire University. She starts in February. She seems to be feeling more in control of her life. She has had to overcome a lot to get to where she is and I am very proud of her. She still helps me at the Historical Society every week, and has several fans. I know she felt I was overwhelmed and frustrated that she still cannot see her potential to do well at anything she applies herself to. She is more excited now than she has been in months. I am grateful that she is still here and she is still allowing me an opportunity to try and fail at helping – she also said she would take dance classes with me when she feels more comfortable in her own skin. I wish I could infuse my hope and love into her.

C. found a Psychology program at Carroll Community College to obtain her AA and see how her life balances out with employment and her health. She desires to help troubled kids from complex backgrounds like hers. She has been going through a lot of health complications for the last year, but doing the hard work to heal. We are learning a lot about the long lasting effects of trauma and anxiety disorders. She is strong and capable, and has a way of pushing through the scariest things and still pulling herself together to get a job done. She is my oldest and went through the most home life instability early in childhood, we moved every three years and she was never with the same medical team to help diagnose her earlier – which could have made her teenage years less painful. She tells me I am the best mom.

When I doubt God cares anything about me or my children… no matter how bad things get, when the world literally swallows me whole and shakes me around and cracks open and plops me right back down on the ground… at the bottom of a huge mountain I just climbed! The sign at the bottom says: Try Again. Fail Better or Beat this damn mountain. Even when the tunnel is so long that you cannot see the end of it, -so dark it feels like death and there is not a glimmer of light, not even a pin hole… Even then, there is still hope. I guess my purpose is just BEING HERE, just being present when I wanted to run away and hide, I chose to stand and hold on. Or it is still somehow just God. I will leave my life observations of highs and lows to outsiders to decide. Is it our hard work of pulling together or is God holding us together when the storms of the world want to force us to fall apart? All I know is doing life this way… somehow we are saving ourselves in the process.

No news is ‘good’ news?

That is how I try to process not getting clear information from my oncologist – after getting the WONKIEST blood test results back. Dr. B ordered new tests and was supposed to get back to me with some kind of explanation weeks ago. I did not hear back from him, but his office called and referred me for a PET scan. This could be purely precautionary, this could be something else; I honestly do not know. But I am pleased to be getting a PET scan FINALLY, at least we will get a CLEAR picture of everything in my body and see how far the disease has progressed and if it has stopped progressing. This is information I would like to know sooner rather than later, but life rarely happens like that. I have to wait until March for the scan, and I won’t be seeing my oncologist unless he decides my tets results show I need treatment again. Having multiple myeloma is a pain in the butt.

On the Homefront, life is trucking along here in Maryland. I graduated from the Thrive Program with housing, so I was rewarded with a tiny equity check I was able to use to get my daughter a new ‘used’ car 1999 Toyota Avalon that we named ‘Henri’. It also means I am now a member of my community who makes enough to pay her bills without rental assistance. Granted, I am paying more in rent than most people pay for a mortgage a month, but Hey, I AM paying it, and we still have a roof, so that ain’t half bad for this single mom. I wish I could report my job was satisfactory, maybe by Christmas, that will change. I am grateful to be employed, just preferably doing something with more ‘positive involvement’ in the local community (also with less sitting). It is quite literally a ghost town at the hysterical society –

However, in the last month I have been to the Air & Space Museum & spent the day in DC and Union Train Station with my youngest daughter who is about to graduate high school and go off to college next year… went on a Ghost Tour in Gettysburg, had a glass of wine at a local wine pub or 2, had a parking garage gourmet picnic outside of a Guns N Roses concert in downtown Baltimore -a concert that I barely made it through, and have even cooked Risotto with someone. I have been reminded to Slow Down and Pay Attention to Where I am standing because good things are happening now and up ahead. I have a best friend I hardly see because of adulthood that always reminds me of the same thing when the world feels like it is spinning or that I am running out of time to do everything. I am trying hard to pay attention to the good in every day, the choices I have, the ones I do not, and appreciate what I have and where I am standing. Life in remission … or Life under a cloud of uncertainty is not quite the Life I imagined.

Where I’m Supposed to Be

My life experiences have placed me in a very unique place emotionally and spiritually.

A friend recently told me; “God has you exactly where you are supposed to be.” later she asked if I believed God makes mistakes. I found myself really struggling with that question, almost as much as I have of my ‘understanding’ of who/what God is to me – juxtaposed against the ‘sold-out-for-jesus’ teenager/adult I was in the 1990s-2016. This was in response to my relating to her that I do not understand why my children love me and respect me so much. Like, Why are they not Angry at how much I failed at trying to do? Let me explain… they legitimately ‘enjoy’ my company, in fact they seek me out daily, to spend time talking, or watching a movie, or to play a game. A coworker told me it was because they came so close to losing me, and now they are making up for lost time. Why was I not content about how much they love me? In my mind, some negative voice was telling me that I was doing something wrong if they wanted to be around me and they were not chomping at the bit to be driving, working, or always out with friends. (I assumed they were not) but that is besides the point.

I realize that since I have survived, I have been doing everything in my power to ‘make sure’ the girls are prepared to live on their own if I am no longer around. Oddly, I have not thought much about ‘Myself’ or my own future… if I actually survived past the estimated dates I was given for survival during 2013 when I was undergoing surgeries and cancer treatments. I have had an internal clock that started the day I prayed the hardest I ever prayed in 2013 when I asked God to give me just enough time to see all 3 girls graduate high school. Here I am, Kim has 1 more year, and already has big college and future plans. However, I have not been as successful as I believed I could have been (in my mind). All I can see is that ‘I survived’, so now what? I then said I felt that they deserved a better qualified and a financially and medically stable mother. I worry that the trauma of the divorce and the sucker punch of cancer and homelessness in the space of 3 years was too much, and now they have have every right to be tired or scared of some things now. I made a promise that I would build and buy us a house, and I am still renting one that is too small for what we need (so I judge myself) rather than just appreciate the fact I have 4 bedrooms, and there are 4 of us, and I can cover all the bills with my income.

Part of my day job is managing multiple social media accounts. A while back, I had stepped away from ‘constant notifications’ with regards to social media access because it was disheartening for me. I found that I lost lots of time and started catching myself checking up on family and old friends and reminding myself of how far I always wanted to be, and how far (from old goals) I am in reality. I get thoughts in my head about how successful I should be, with my work ethic, and my enthusiasm, but the self confidence was so low that I never aimed for anything higher than someones assistant. I love working for big personalities and people who crave excellence in whatever they do. I crave challenge, and that is what I get, so why do I complain so much? Isn’t it strange that I just said: I love working for people? Because deep down, I do actually want my own business and to work for myself, but also, deep down, I love helping other people achieve their goals.

Social media allows for us all to view and/or obsess over our Childs ages, their accomplishments, their education, the speed of which they learn something, and then I obsess over my shortcomings so much that I cannot see past them. Another stark reminder of my mortality. Also of how I have to be BLESSED and need to be more GRATEFUL for how far we have all come. I found out that my boss lost a spouse to multiple myeloma, and one of the most amazing women I know is still fighting multiple myeloma for over 12 years now. She is a woman I admire, as her family admires her and she does not deserve to suffer the pain that comes with active multiple myeloma. I have lost a handful of friends from the same disease, and here I am, literally 8 years later and I do not know exactly what to share as the reason for my current health reports. I want whatever I do for a living, to make an impact on the community around me in a positive way, at the very least.

I had another clear mammogram, my thyroid is mostly balanced, I have perfect blood pressure, and no cholesterol issues, and it always seems funny how the cadence of my doctors voices change when they are giving me reports. They LITERALLY sound surprised that they are giving me good news, and sometimes they order extra tests, just in case they are missing something. I have not been suffering from any adverse effects of multiple myeloma since 2016, and there are many questions I have for why that is the case for ‘me’ when so many battle this disease and it aggressively takes them.

So in my mind the question, am I where I am supposed to be? 6 years now… the longest I have lived in any one place since I was born. I took a job as Office Manager in a Historical Society, as an outside southern native – with little to no museum/history experience, but I have been able to find my place. Kim told me that I picked one of the top high schools in the country, and she is grateful that her college applications will reflect that. I am confident that her art portfolio will give her access to the schools of her choice. I also found a tutor to help Kat with her Math and Science, so she can enroll in classes at Carroll Community College in their nursing program once she is ready. Courtney has been working and starts Carroll Community College this summer. Yes, I am where I am supposed to be. My new goal is learning how to accept the fact that I survived, and I am the one that is charged with being a mother to my daughters, and I have been given the extra time I prayed for – so now is time to figure out what to do with it… or learn how to pay attention to how far we have already come and find some peace in that.

Remission

I recently saw Dr. Borello for my 6-month check-up and I heard the word again. I looked it up because this terminology sometimes makes me feel like it ‘could last forever’ but to be reminded, the myeloma is still there, M-Spike undetectable… but yet… still detectable? It has been almost 9 years since my initial multiple myeloma diagnosis on December 4, 2012.

Multiple-myeloma-causes

re·mis·sion
noun

1. the cancellation of a debt, charge, or penalty.
2. a diminution of the seriousness or intensity of disease or pain; a temporary recovery.
   AND THE FORMAL:
3. forgiveness of sins.
   Ok, now, wouldn’t all these things be the BEST in the world right now? I mean, seriously.

Anywho, I asked him point blank… Dr B, can you tell me WHY? Or How? Like, what am I doing, besides a change in geography and circumstances… and what can I ‘keep doing’ to make this thing stay? I said I have lost friends to myeloma, and we had transplants, and does he think THAT was why I was still in remission, when I was verbally told that I would NEVER achieve a remission?
…in my head pops; old diagnosis memories & reminders of death approaching and wondering about my children…. I am sure I didn’t spill it all that out, but if I did, he is super kind and would not flinch. He just said… “I honestly don’t know, and you are the 3rd patient I have seen today that has said something similar.”

…. So, I am all in my head now… wishing someone could tell me stem cell transplants do actually help or was I too hasty to undergo 2 of them back-to-back, risking my life like that on the belief that I was buying more time… Now back to my thoughts of what remission means. In 2013 I did pray for God to let me live for 10 solid years as a mother (that is how confident in the rightness of my mission in surviving) … I probably even bargained with God and he may have laughed. I was too naïve to think about what kind of life balance would happen once I survived what felt not survivable at the time. During chemotherapy treatment, I prayed if I could be around long enough to see my kids all graduate high school… Now, 6 years later, my cancer is ‘almost indetectable’ which feels like I still carry something that could re-activate at any time… Yet I am blessed because we are all alive and we all survived. I merely wish I had a guarantee that I could keep the myeloma undetectable and be able to live a full life and see my children grow into adults with families of their own.

I talked to a group of veterans last night and one put it all in perspective for me. He and his wife have been trying to have a child for 10 years without success… Sometimes I need to be reminded of my blessings. I feel like a human Unicycle… I just roll through life like a single wheel on a ‘stationary bike’… sometimes it can be a bit disorienting.

The basic good news is… the myeloma is not gone, but it is detectably ‘undetectable’. I am still in Remission… and I made it to age 46 without needing Revlimid again. My weight is balancing out, my hair is even growing kind of awesomely. I put in a request for a covid vaccination, but my appointment has not come up yet.

Weighing In…

So, I hurt my back almost 2 months ago… I suspect the current injury was initiated last summer when I fell on those pool stairs like a toddler just learning how to climb stairs.  The cancer is not doing any damage, but my Golden Girl-esqueness… or the left-over stem-cell transplant procedures have left my body in a wrecked condition (my bones).  

I was sitting down at my desk, for the umpteenth day since covid began… to sharpen my watercolor pencils. Why you ask?  I have to come up with daily tasks to pass the time or I will go crazy. My current self-imposed task is to draw a different variation of hummingbird in my sketchbook, because I am currently suffering an inspiration block that prevents me from just ‘free-flowing’ with my projects… (maybe it’s past military training… this need for some external instruction or “orders” before I can perform something I ‘already’ know how to do).  

I have been looking for virtual office work or artwork I can do from home. I can no longer take shifts at Whole Foods… even to pass the time and get around adult humans for contact ha-ha. I physically cannot push around a grocery cart… my worst nightmare is I will need to ride one of those carts around in the future. I will reject that idea, and instead believe that the spine block I am getting next week will give me the pain relief I need in order to start physical therapy and see if the disc heals on its own.

Anyone who knows my personality knows… Sitting still is not one of my stronger life skills.  Resting… another common skill… also not something I do very well.  I have been told (by 3 daughters) that I am cranky whenever I am in pain… or healing… or limited or restrained in anyway.  I have turned to my childhood artist in order to cope with all this sitting and alone time.  Let me say, I have not spent time with an adult other than my dogs or my kids in many months, and it seems really odd at my age.

I got to facetime with my nephews in Japan, and I have to say, I RECOMMEND facetiming with tiny humans at least once a week… it will invigorate you as a distraction from all this terrible world news -besides- having the opportunity to laugh is quite therapeutic.  They are handsome and adorable, and talking to my smartly grown-up little sister took me back decades and was super entertaining. 

Biden was inaugurated yesterday, or was that the day before?  I literally have lost the ability to consistently tell date or time without constantly setting alerts, or leaving NPR running in the background.  I found myself feeling hopeful and patriotic, watching the news for the first time in over a year (Parade Across America).  As soon as I felt it, I could not help but think of all the people that would scoff at the ‘blatant human positivity’ or the ‘mumbly older president as he attempted to unify a fractured nation with words that we have heard in the past’.  I thought of all the people I know that are Trump supporters, and how heartbroken or terrified for the future they are because they may have been misinformed about some issue or another.  Both sides (have misinformation) AND have legitimate grievances, but attacking the other side is not the way to handle it… again thats my personal opinion only.

This Country has been fractured for hundreds of years, but It likes to tell itself that it is not, and that ‘all is fair’ for everyone, as long as they work hard enough, and they are ‘good and honest’.  We tell ourselves that, but the reality is not the same as the ‘internal hope’ that most white people have.   I say this… but it is not a simple issue of black or white, it is bigger, it boils down to economic freedoms to pursue a life.  What seems to upset people is this… if EVERYONE does not have the same Right or Experience, shouldn’t there be a collective answer on how to correct it?  Or is life really this: ‘getting what we get and not throwing a fit?’… however, if I HONESTLY look at it… this concept is on a deadly scale for some of the population.  Not everyone can just pull themselves out of bad situations, when they are buried under generations of garbage.  I won’t go on… you are welcome.

I am not naïve; I do not think Biden/Harris are perfect humans;  I do not negate how many good things Trump did for Veterans Affairs (other good acts I have heard of) … I can personally attest to this and I am a grateful veteran that appreciates my access to healthcare and benefits.  Honestly, he is guided by self-interest – not national interest (sometimes those two interests combine, and Americans benefited = end results), but it is not even about him… he is just a man, and he has a group, and it would be naïve to assume just getting rid of Trump will actually help heal the nation or stop the national unrest that is bound to repeat itself as it has done for all of history, until the issues are Faced and Resolved once and for all.  (These are my personal opinions; I do not support any movement or party with my words).  Call me old-fashioned, but I believe there should be consequences for bad behavior and the former president (and those that enabled bad behavior for their own political gains).  

Home Update:  My daughter is still with the Eating Recovery Center team in Colorado.  I have very little I can do from here to encourage her to want the recovery she is offered.  She is doing a lot of hard work and making small amounts of progress each day.  She feels lonely and she wants to come home, long-term treatment can be exhausting if you are unable to surrender to it.  She moves down to residential treatment this week, if she progresses (does not act on symptoms) she will move down to partial hospitalization and live in a small ED community with structured supports to help her maintain her progress before setting up a plan to return home.  I can use all the prayers that we hold the line here in Maryland.  I wish I had a way to let her know she has MANY out there that wish her love and she is not alone.  

I hope I did not offend anyone with my views.  I have remained silent on purpose about anything political because I do not wish to alienate my friends or family.  I truly believe we all have our reasons for what we do and I am in no position to judge anyone else. Have a great weekend, and thanks for listening to me vent.

“Little fires everywhere”…

So I just finished the season on Amazon Prime with Reese Witherspoon and Kerry Washington… impressed with the acting, the fairly accurate depiction of a world in the 1990s (choice soundtrack), and the intensity of interactions with the two main characters. I bring it up, because, like most media I consume, I start thinking and applying my reactions to scenarios to real life.

Life can be made up of tiny incremental choices or reactions to scenarios, and each one can lead you down one path or another. I find it comforting to know that I am not alone when I look at my personal life and it does not match my ‘hoped for’ ideas. To grow and understand how seemingly random thoughts, words, or actions overtime can start a wave of negative outcomes in your life. Maybe life is about overcoming the realization of YOUR TRUTH and learning to be content with it. Acceptance.

I have been on bedrest for a week+ now, and I am a horrible patient. I somehow have slipped a disc in my back, or pinched a nerve in my hip, or broken something when I fell months ago – that has just decided to start acting up. My lower left leg is numb from my big toe to my knee, and the knee to my thigh feels like a fire poker is stabbing it anytime I stand up or stretch it out. I cannot walk or stand for more than 5 minutes, and I am whining like a baby. I had MRIs done, and will have another couple tomorrow. I hope they are going to tell me something simple is wrong, (my mind worries), if something ‘not serious’ it can usually be helped at home with steroids, pain meds, & bed rest (none of these things has helped). With this multiple myeloma, being in remission since 2016, and already having degenerative bone disease in my spine – anything could mean ‘anything’ or it could mean ‘nothing’ at all. According to my kids, I do not stay in the bed long enough, so it does not count as resting. I ‘feel’ if I don’t keep trying to move, things could get worse, but that does not seem to be the case.

I hope it gets figured out soon, because I would really like to start working again.

I wonder if there is some greater plan… like God trying to teach me another lesson. I have been told I have issues with asking for help, or receiving help, and not an ideal candidate to get sick or have an injury that limits my ability to walk or do anything. My kids want to help, but I am a slight control freak when it comes to ‘doing for myself’. The girls have developed some uncanny ‘voice impressions’ of how grumpy I sound when I am in pain or whenever I need help. I worry if I am going to be able to handle bedrest for longer if it is prescribed… without going nuttier than I already am.

Anyway, a few updates. My 18 yo has just finished her 2nd week in residential treatment in Chicago. I have a good feeling that this team is able to provide what she needs to take charge of this disease and her life. My 16 yo has been working at Kohls, and has learned how horrible people can be over the holidays in the retail business. She has been taking hybrid classes at school, and getting through her Junior year with no problems so far. My 21 yo is working all the time and is working on getting her teaching certification. She has been painting and writing a lot. I have a family full of writers and artists. Life at home has been pretty relaxing and uneventful. We decorated the house for Christmas and I have gotten most of my shopping done.

It will be a strange year (besides covid), my middle girl will most likely not be here, so just the 3 Yoder women and 2 dogs and 2 cats. Christmas time at home… maybe we will get snow? We will probably graze on Christmas food and watch old Christmas movies and play games all day. I am looking forward to it – however relaxing will be a challenge. I have been trying to locate all of my contacts and address books, but with very little luck. I have been combing through old emails and trying to find addresses to mail out Christmas cards. Sadly, my friends list has gotten small over the years, and every person I know or care about – lives across the country or the world.

No M-Spike

I saw Dr Borrello and got another “Congratulations” – hearing news for the 4th year in a row… still feels like winning the lottery. Having multiple myeloma during the COVID time can feel really scary. However, the less I give cancer a thought – the less I feel afraid of it coming back again. I do not really worry about COVID for myself, but I think of those people like me that have it and are not doing well. The word remission means (to me) The cancer is asleep or not totally gone. (Always lingers in the back of the mind)

I am happy to report I feel stronger and healthier all around this last year. (In spite of the tailbone injury). I learned a lot of hard lessons and had to let go of many things held on to. My mental health care improved, too bad we can’t repair choices gone bad or relationships lost along the way.

Since March’s unexpected unemployment dry spell… I have watched The Walking Dead, Game of Thrones, Umbrella Academy, all of HBO John Oliver, American Ninja Warrior and exercised and cleaned to pass the isolation days while trying to get a new job. I ended up working for Amazon Fulfilment at a Whole Foods Market. Doing other people’s shopping is not my dream, but it’s an opportunity to get out of the house and make some part time money.

I enrolled in classes at UMBC for an Art Education program to start this winter. (Time to finish the Bachelors at least). I have been thinking about what I will do when all my children have graduated high school and start college. Teaching Art seems the best of all worlds, helping kids and having my own studio space and easy work schedule. (I will be an old-weird art teacher)

My oldest daughter returned home and has a job interview tomorrow. She enrolled in an early childhood education program at Carroll. The eating disorder has been wrecking life for my middle daughter and it affects everyone. She is going back to a residential treatment program – we are hopeful but realistic about expectations. Until she beats this – seems life will stay on hold. I wish prayer still worked for me. My youngest daughter just got her drivers permit. She had a job interview but still hasn’t found anything yet- so she has been bummed. We now have a full 4 bedroom house with a single bathroom. (Yikes). During COVID – We hike a lot, ride bikes, swim, or play video games.

Anyway, taking care of myself is the best I can do for my little family. The cancer is not active, living in/under stress… there is hope the remission will continue.

Shaking Hands

Someone told me more than once that they know I am serious, by my very first handshake upon meeting me. I do take handshakes serious.

I am glad to hear this is communicated, because often I feel my messages are not clear. Anyway, I was due a bloodwork checkup and a disease percentage check. Honestly, I was half expecting Dr Borrello was going to tell me the cancer was back. I was pleasantly surprised when he said “Well, I can say, You are a lucky woman because you have gone so long not needing treatment.” He reached out a hand and shook it, congratulations. Then we scheduled a full skeletal survey because… we must be safe.

Multiple myeloma is sneaky in my opinion. To be such a big deal, but also possess the ability to sleep in your body and allow you to feel cancer free. It allows you to dream and hope for a future beyond the ten years you estimated you would get because you were so young when it was discovered.

I sat with my almost 18 year old daughter and received that handshake that felt like a high five inside my heart, and the proof to her that I am keeping my promise “Not to die”, and I can subconsciously pressure her to keep her promise she made to me “Not to die”, at least not earlier than Gods appointed time for us.

Life gets better one day at a time, sometimes nothing at all happens, sometimes Everything that Can… will happen, good or bad. I am typing this from my phone, because my computer acts like it was made in the 1990s… in the place my hopeful spirit likes to hang out.

I am happy to say, I am still kicking cancers butt, I was approved for my cannibas card, which I am excited about. This is the only thing I have done, beyond changing my diet and exercise that maintains my remission. It may not help for everyone, but it would be a shame to not try something that can work if you get the opportunity. Regulated use can really make a difference in quality of life minus the fact I have no need for chemo after being diagnosed December 2012…. woot woot I gotta shout some days.

Sorry my last post was so glum, much is happening, I will update soon.

Time

How do I express what it is like to live a life that feels so foreign to anything I could have ever imaged for myself? The last several months have been a whirlwind of emotions (nothing new, sadly); but something has changed in the way in which I process them. I have been quite happy and hopeful at times – actually seeing progress – or opportunities missed – coming back around.

I love my children, more than I can ever say with words, so maybe that is why I find myself – by any means necessary – seeking safety to provide them opportunities to thrive. Maybe this is why I take failure so hard, I know in my heart I am trying with everything that is within me, to change the course. There is a complete disconnect between the woman I thought I was, the family I came from, and the course in which life has taken.

I have had to accept that no matter what I say or do to help does not mean that there will be a positive outcome. Sometimes you can run a race until your heart stops and still come in dead last.

To almost lose a child on multiple occasions, regardless of doctors, therapists, family or friends well-wishes… sometimes there is nothing you can do to change the course of something that began years before you had any awareness.

Working on a film provided me with some understandings – not solutions. I wanted to reach her, inspire her own passion to help others. I am sure our story can help others (cautionary tales being what they are), but most of all, I think I wanted to stop the hands of time. So many families have lost their children to disease, mothers write memoirs about children that take their own lives… I swear to myself I will not lose my girl, but I cannot control what I do not understand. Part of me hopes that spending time inside the darkness that inhabits the mind of a traumatized young person can somehow lead them out towards light. I foolishly hoped that my ‘faith’ would inspire motivation to fight for a better life. Some illness carries with it… a host of problems that cannot be seen unless you are closer to it. Living on my own, is not something I imagined would be a part of my ‘story’. I crave having a hand to hold when I am overwhelmed, or a hug, or a restful sleep. The last time I remember relaxing, was after my diagnosis in 2013… I was a resident of Barnes Jewish Hospital in Missouri and getting that second stem cell transplant. I remember it was the most relaxed I have ever been… I was alone, but I felt close to God somehow. I used to crave the company of people, friends, family, being a caretaker, nurturer, and a clown for the sake of love or friendship… I am not sure where that person is now.

I cannot rest, I can barely sit still on most days. My mind is weighed down with the uncertainty of multiple myeloma resting inside of my bones, and always wondering if any small sickness is related to the cancer. People cannot “see” myeloma and every doctor seems to forget I have it, until they open my medical records. My finances are a mess with student loans & medical bills that rival the cost of a home, and I would work more if I could – beyond caretaking. Seems impossible to rise above the ocean of debt to breathe freely. If I were alone, my benefits would be adequate – for that I am grateful, but I am responsible for others. My mind is weighed down with what doctors instructions… remain stress free, rest, care for my body, eat right, rest and maybe it will extend the cancers remission. Oh and my daughters doctors have a list as long as my arm that I am supposed to be working on as well. It is almost a guarantee the cancer will come back – especially if things do not improve. Who in this world can be stress-free anyway? What does a mother do if she wants to live, but she cannot inspire her own child to seek recovery for her own sake? A child that only complies to appease a mother, is not living, the fight MUST come from within the self.

How many times will I arrive to discover an unresponsive child, how many times will I need to experience forms of death, and not understand what for?… My faith as a young person was strong; yet I was naive; blind, and insanely hopeful. (I would give the world to feel like that again). Now questions plague me at night. Nothing I was taught or learned has prepared me for the damage that occurs to a soul when faith and belief does not match up to reality. I could have lost her again this week – and each time she comes home; I think she is inching towards recovery because I remain close by, and I stay vigalent… It is hard to admit there is a blindness when it comes to my love. Addiction comes in many forms.

I would ask for well-wishes, but I know that nothing can be done until she is ready to fight it. Time passing is my only constant… The world spins around me, as I stand still, waiting at doors – the wooshing sound of happiness slipping from my fingers, time spent waiting and wishing for what was lost to be found. (or wondering if happiness was ever real at all). I am not trying to bum anyone out, but I want to find a way to get back to living a life that matches my soul.