the myeloma diaries

Time Flies when you are having Cancer…

I have not done an update in what feels like months because so much has happened in such a short passage of time. It seems as if my time has passed in a vacuum. It has been intense, so much so that when I did find a rare quiet moment, I spent it researching the physics of time to best understand it. I posed a question to myself and the universe… How could so many things happen to one person in such rapid succession – that they can literally ‘not see it’ as it happens? In relation to my situation, these changes are so profound that I know I will never be the same. Why I call it ‘time in a vacuum’ is that these changes are occurring when some might say my life is ‘technically’ standing still, or at the very least ‘on pause’, as in I am ‘not in the rat race’ like everyone else. (unless of course you have been given a cancer diagnosis recently. haha).

I have been able to meet people ‘not‘ in my same situation, and very rapidly make a determination as to whether we have a connection not, and whether I even want to stand there for however many minutes it is to figure it out. (this is big for me, because the person I used to be would stop and give all of my time and energy to every person I met and I would not know whether it was a bad choice until they actually did something to me… and by the time I figured it out, I would have lost TONS of valuable time plus acquired some new scar of some sort… lol) Folks with poor boundaries, and low-self worth…

Has anyone ever experienced the sensation that you are living in increments of time that are falling like pieces of sand in an hourglass? There is no reaching up and plugging the hole where it falls, because it will only fall through every open crevice in your hands, so there is no point standing there trying to stop it or slow it down. You are left with two fundamental choices: stand there and let it bury you, or start thinking of what you can do to change your circumstance. Now this is tricky in relation to cancer, because ‘technically’ you cannot ‘change that circumstance, or cure it per say’ but you can change what you ‘think’ about it, then you can build a metaphorical ship out of life debris around you and ride the sand wave. This way you at least do not waste whatever time you ‘do’ have left.

Just because some doctor tells you: “Hey, you have terminal cancer, and you only have XYZ to live, that does not necessarily change a lot about what you can do. You might get a little sense of urgency or purpose behind the things you do or how you spend your time, but realistically, No One Knows exactly when we are going to die or how long we have yet to live. That is just a fact, my opinion is that doctors give us statistics because humans need a way to quantify things, to plan for things, to prepare for even the things we cannot possibly prepare for. haha.. The funny thing about ‘preparation & planning’… “Life happens when we are busy making other plans.” It takes much effort for someone like me to actually live in the now, but I am ‘trying’ (we know saying “I am Trying” is such a weak thing to say because, really?) Either I am Trying or I am Doing… as Master Yoda says: “Do or Do Not, There is No Try”… so I here I am in the blog universe, saying it out loud, “I will stop trying so hard to plan everything, and just Live”… Maybe words said before many will give me a sense of responsibility or accountability to actually stop saying that word “Try” in regards to changing something that needs to be changed to the word “Do” and actually ‘change it’.

I am flawed, so, we will see if there is power in the rambling. Truthfully, we should all be prepared regardless, but often that is just not how we all think until we are ‘forced’ to do so. The newest command I have been given by people in my life that care about me the most is… “Stop & Breathe”… did you know that you can literally ‘forget’ to stop and “Breathe”, and yet you can still be moving? It’s pretty weird, and I can attest to some confusion, dizziness, and just an overall sense of doom when I forget this simple action. It is a strange thing to be concerned with basic survival in the present, and simultaneously focused on preparing for a future that I may or may not be a part of. But as if that is not enough to actually ‘think’ about, I am also responsible for 3 other human beings and their future security which is way more important than anything else.

Stay with me here… haha I am trying to express what it feels like to be moving while standing still. I even looked up the definition of the type of energy that exists like this… it has been measured, (don’tcha just Love Science?). This is how I define what I am feeling all around me every day. (it is something like ‘zero-point energy’ if you have not already started shaking your head at my absurd and obsessive-compulsive need to understand ‘everything’ and just stand and ‘BE’ in this moment and Breathe without analyzing the air I am breathing or the ground I am standing on. In spite of all the head shakes I assume everyone is giving me, rationally knowing I cannot see you, and irrationally being very presumptuous and rude to assume; because we ‘all know’ what ‘assume’ means… I will keep going.

Vacuum energy is an underlying background energy that exists in space throughout the entire Universe. Now me, as an insignificant, tiny speck in the universe, these are ‘all over’ changes I am feeling; physical, mental, emotional, spiritual and relational ones. What I found from the research (since I apparently have all the time in the world to use big words and ‘pontificate’ about life) it all can be ‘very loosely’ defined as a sort of Quantum Field Theory and this is how I am going to file it in my brain, and somehow, it just makes me feel better. I could be full of it as well. You can look it up and get back to me if you think I am a lunatic, but really it makes no difference because as I just so adeptly described, my ‘sense of time’ does not leave room for actually caring about that.

The missionary in me never fails to mentally think of a bible verse when I am trying to bring things ‘I think I know’ into balance with ‘things I have yet to learn’; and this is the one for today: 1 Corinthians 13:12 NIV – “Now we see only a dim likeness of things. It is as if we were seeing them in a mirror. But someday we will see clearly. We will see face to face. What I know now is not complete. But someday I will know completely, just as God knows me completely.” So here I am at a ‘stand-still’ (depending on your definition) or hovering in limbo waiting to see what the next step is going to be…

Simultaneously ‘moving’ because… I have many things to accomplish and prepare for, future bills to pay and a huge ‘?’ spinning over head that only I can see, as to exactly how everything that ‘needs’ to happen will actually happen. If the rest of life is any indicator, it will work itself out, because miraculously, when we need something, however small, that something arrives. I have always attributed this phenomenon to God looking out for me, but I know people want to call it coincidence or Serendipity. I often feel I will be judged by other Christian people, because I myself have been one since I was 14 years old, which by definition means I should be a little further along in exercising my faith.

I hear people say ‘put it all in God’s hands’ or ‘be still and know that God is bigger than your struggle, and everything is going to be ok’ and I always want to find peace in that. So when I still have that anxiety or that compulsive need to ‘act and understand’ before I can perform that faith action, I have a sense of guilt. I wish I could be different, and I feel this ‘very often’, where I do not want to be “Me”, because well… take a moment and think about why type of mind can actually say so much, about so many things, all at the same time, and picture it happening inside of ‘You’ and tell me if that is something you think would be a fun way to be…can you? I do not want to think so much, see so much or even feel quite so much, the reason I say this is not that I do not enjoy being a sensitive and intelligent person, but I say this because half the time most people think I am clueless.

Like I said before, my body mannerisms and my mind often contradict each other and it gives a false impression initially. This seems to be a very definitive trait though, because that is exactly how I am treated, and more often than not, rather than correct someone, I just ‘let’ them think whatever they want and catalog that person as a person I cannot be myself with or I just avoid them all-together. Now the way time is flying by, all of this will change I am sure, but I am just talking about how it is for me today. I figure who ever is still with me is either doing it because they ‘get me’ and genuinely care, or they are doing it out of morbid fascination much like you would have at watching a train wreck in slow motion. haha.

To have your brain and your body mannerisms work in constant contradiction to each other is not an easy thing. Even when I tell myself and people who love me remind me that I have ‘every’ right to think or feel whatever I do… the same exact physical and emotional reaction occurs each time, and it can be very frustrating. I shrink and clam up when I need to do the exact opposite. I often need help from people for this very reason and I pray all the time that I will get better, but apparently it took most of my life to create this behavior and it could take a long time to change it.

It has been the cause of my never attempting jobs that matched my skill or education level, it is why the military was a terrible fit. It is why I used to desire to be a traveling missionary that physically, emotionally, and spiritually loves, cares for, or even entertains people of all ages; but I never believed I was someone who would be great at raising a child in a way I personally think they deserve. Also, I certainly would never want for a child to be anything ‘like me’. With raising children, putting them first came as easy as breathing, so much so, I ‘over’ did it, and now I get to spend the rest of my time with them attempting to backtrack and retrain them to ignore everything they learned up to this point. haha One of the most important things for me to impart them with is a sense of self-sufficiency in the respect that they should not look for another person to ‘take care of them’ or ‘define them’. I want my children to be active participators in life, not passive spectators. The perks of being a Wallflower? Not many.

Being a servant by nature, for me is very rewarding, and I never tire of doing things for people who truly need it, I am not lying when I say believe I am ‘Built’ for it. I am not interested in martyrdom, but I would be content to just spend the rest of my life helping people in a setting where I am not seen as weak or as simple-minded just because I am not interested in climbing some ladder or making lots of money. I like to work because it makes me feel alive, and not wasting space here on the planet. The passion I feel about the injustice that happens in this world, and the ideas I have about how to help people more effectively is pretty strong. I see so many ways that things can be done better. I wonder if my socially awkward problem will ever disappear long enough for someone to listen to what I have to say without my having to hide behind a computer screen to get the ideas out there. I believe someday, when the hardest part of this whole cancer thing gets behind me, I could manage effectively if I had my own shelter or facility that serves the community because it involves advocating for others. I am not sure what happens to me inside when I am advocating for others, I become quite vocal, and passionate.

If I could just get over the hurdle of not knowing how to advocate for ‘myself’, I think I could make a difference somewhere. haha What I am learning slowly is, this thing I have, that I fight so hard against, is supposed to be a spiritual gift, but over the years it has been perverted and taken as something else entirely. Now I have to be more discerning and make sure to be careful who I allow into my personal life or my personal bubble in order to protect my heart and my spirit. I realize if I ever truly want to be a productive member of society, I have to get over the crippling fear of standing up for myself. I am puzzled by the fact that there are also people with very strong, assertive and unique personalities that I feel very safe and comfortable around, in fact I gravitate to those people more than anyone else. The people are the ones that hold no punches and tell me the truth about everything no matter how hard it might be to say or for me to hear, and I do not feel I have to guess about what they are feeling all the time. I am very uncomfortable around needy and emotional people because those people set off a trigger of stress and anxiety inside of me.

The people I do like to be around are the ones that empower me to be stronger and move further away from that person that I do ‘not’ want to be and closer to the person I ‘do’ want to be. I want to be this type of person for others, someone who does not sway in the breeze at every change in the climate around me. I love to entertain, I obviously love to tell stories, and I love to love on people, but I also want the ability to be balanced and calm when I need to be. I have not achieved this yet, but I have come a very long way. I can sit in a room with someone and not feel forced to talk, I can even sit in a room without the tv on and eat a meal, I can even sleep comfortably in a dark and quiet room without stress or fear. That is a lot of change for someone like me.

As far as slowing down, and breathing, or resting…. well… I have not developed the ability to that, yet. It takes a physical and deliberate act to stop my body and my brain from immediately jumping into as a reaction to something that is happening around me. I would have to physically make myself not ‘research and try to understand’ everything that I am experiencing at any given time because it comes automatically. When I see a problem, or a need, and I think I can help or make a change in myself… taking action is kind of my thing… telling jokes, and writing… and talking too much… yeah… that is unfortunately the package I come in. 😦

I want to believe that if God is who I believe He is, He most certainly would understand me. He is the creator, so He would understand my inability to just rest in the words people say to me right now, because I have so many things swirling around me like a tornado. I am not a monk in Tibet meditating in blissful silence, I am not a missionary in California on a mountainside so close to the sky that I feel like I can touch the stars as I am singing sweetly, I am currently in the middle of a collection of storms that are standing in line waiting for the others to pass, so they can try to swoop in and finish the job… and no amount of taking a breath, sitting down, pinching my thumb and pinkie together and quieting my mind right now is going to stop it… That is my reality, I wish I could say that I am ‘that awesome’ or in some way I could inspire the world with my amazing ability to allow Jesus to calm my storm and wash all that anxiety away without having to take a Xanax. haha. According to the bible, that is the very thing I am supposed to do, just like Peter, I am supposed to step out of the boat as he can physically see and feel Jesus calm the storm and stand on the water… and I am supposed to walk out to him, but instead, I sink… Epic Fail.

My mind is pretty wide open and I love, love, love learning new things, or better ways of doing old things. Taking a problem and like a blue print, stretching it out on the table to figure it out using multiple points of view and experiences in order to find an answer. To me every human being has something they can bring to the table, and if you are not open to hear what that another person has to say, you are obviously not entirely committed to understanding the whole truth. I do not have to agree with what you say, but I do have to respect you as a person and your right to have an opinion, and I never think it is right to bash someone else for having a differing viewpoint. The amount of energy it takes to be negative seems to be far greater than doing the opposite.

I like it when I meet someone and they surprise me… You know, you meet someone and you ‘think you know’ but you have ‘no idea’. I love that. Some of the most amazing people I have ever known have been through the worst tragedies and felt pain I could never imagine but the way they live, walk and talk you would not know it. They are those ‘Been there, done that, got the T-shirt‘ people, but that T-shirt is in a box in the past somewhere, because they do not live there anymore. There is a humbleness, a peace, a rawness that just cannot be fabricated… This person usually has awesome sense of humor, because you have to laugh when some life scenarios are just beyond comprehension. They operate knowing they do not have ‘control’ over anything other than themselves, and they are ok with that. Those are my kind of people.

These people are survivors, these are the people who have been knocked down more times than a human should be able to withstand, but that person “Cannot stay down, it is Virtually Impossible” for them to stay down. The whole world is yelling at you to stay down or just give up, but you physically can’t. This person could have teeth missing, a broken nose, arms out of socket and a blown out knee, they will still drag themselves up and keep fighting. Then if something takes away the parts of the body they need to stand up, they will fashion some sort of prosthetic to enable themselves to keep standing. It is sad the way some people get so uncomfortable if they think about dying, or noticing physical and emotional differences in a person they are used to seeing all the time.

Some friends completely drop off your radar, as if you never existed because well… they just do not know what to say anymore. The relationship will change, but it does not always have to end.There really is nothing you can say about it, because you cannot change it, but you can treat them as though everything is whatever it is, life goes on, and that is really the way it should be. Unfortunately, it is really hard to ‘not talk about it’ once you have it, because so much of your life revolves around it, but if you can accept the person as they process it, and laugh at the jokes that come with it, it is not entirely unbearable to still have that friend. If you cannot change something in the immediate, and I am not dying tomorrow, there is no reason to act like I am in the meantime, you know?

Now I have a more biting sense of humor. I cannot tell you the number of times in a day that someone will say “I am am so very sorry” when I have to say that I have cancer for one reason or another, or “Oh wow, will you be losing your hair soon?” or they say, “Wow, you look just great!” Even when you know you absolutely do not look great that day, especially a MM patient on steroids that cause you to gain weight and your face swells like a blow fish… but yea… I look great. Then you have the knowledge that doctors are literally pumping poison into your body to kill something that is invisible to everyone else. My nurses are always wearing masks when they plug me in for my infusions because she says the stuff is so toxic that she cannot risk breathing it in while they are giving it to me… funny. All the while, you are hoping against hope that the number of good cells in your body far outweighs the number of bad cells in your body, so you can stand up and say you beat it when they are finished with the predetermined number of treatments.

I spent the greater part of my life ‘trying’ to fit myself into a mold because I just did not want to be whatever it was that I ‘actually was’. When you spend a lifetime doing that, agreeing with everyone ‘even when you don’t’ and spending time with people who you really do not like, but do not have the guts to tell them so… It has an effect on you. I am seeing my life in chapters of a great big book now… Who I was back in chapter 1, is vastly different from in chapter 3, and the present chapters are pretty short, but each change is big, and what I am finding is that person that I started out as in Chapter 1 is more than likely the person I was all along, before I turned myself inside out. Now at age 38 with each experience there seems to open another space in my mind and a brand new understanding for certain things that I always thought I had all figured out. The more I think I “Know” the more I just “Do not Know”. I get a little annoyed by people that oversimplify life and have answers to everything, because they just ‘Do not Now’ what they are talking about and neither do I.  I am pretty sure that For the first time in years, I am not working, I am not running, doing all the things that most families are doing to make ends meet every day. For as long as I can remember, I have operated on a clock, whether it be my internal one, or the external one the rest of the world operates on as we go to work or go to school, or whatever extracurricular activity you or your family may be involved in.

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