the myeloma diaries

So this is the conclusion to one of the more difficult weeks in a long time. Having to start over -could not have happened at a worse time. I was with my friend, and the legal players we were saddled with could have been taken directly out of a John Grisham novel, while the judge and lawyers talked, not once looking at her records, or asking questions, nothing. When he did speak, it was disparagingly – because she dared to defend herself because he was not… he scolded her, in front of everyone. I briefly saw into my future meeting with this guy on the following Thursday and I was pretty worried. Ugh… just chalk it up to the long list of small town injustices I have witnessed this year.

Not much less is left to surprise me anymore.  I put in an application with the Legal Aid of Southern Missouri, and she called me back today. It looks like they might be able to take my case pro bono… so it is best that NOTHING happens to me during the transplant…

I better not die or I will be pretty pissed, haha, so let’s all just pray I do not die. haha… No pressure… but luckily, I have WAY TOO much yet to accomplish.  This is how stuff generally goes, yet people over the years have wondered why I was not divorced sooner… The attorney in Florida said she has seen these things drag out for years. I am only 1 year and 1 month into it so far… now ya know. haha

My friend and I were discussing what Divorce feels like… Divorce by itself is horrible as a death of a loved one- in my opinion.  I do not think that anyone would ever get married if they had any idea that they could be in a position where it could happen. Then you add life stressors to the mix, and it’s a perfect hurricane. She describes hers as being hit by a truck or train (I cannot remember exactly), dragged several miles, managing to get up and walk again, but with a broken arm and leg and still attempting to walk away from the wreckage, and having a swarm of bees chase her relentlessly… I can relate to her feeling on many levels.

Unfortunately for me over 19 years into it, we are facing a mountain that I inadvertently helped create. I am the metaphorical rechargeable battery, that was rarely allowed enough recharging to function in the relationship.

Each time something would happen, it would create a jagged rock pile that I would set aside, and that rock pile filled me with fear and doubts, and I started thinking of ways to prevent another pile like that from forming because in the early years I was more concerned with ‘appearances’ and did not want anyone to know.

It kept happening, and the taller it piled, the harder it was to see where I needed to be in this life and what my purpose was, because I was trapped at the bottom of this hill. It gradually formed a mountain, and each time I tried to leave, another child came along.  The girls were Gods way of showing me what real love & hope was, what real purpose was, and it gave me the strength and courage to fight. As a mountain formed, every year it got a little harder to climb, or leave that mountain behind us, and between us, so we would never have to live or breathe the same air again, pretend it was a really bad dream, so we could have a new life.

Unfortunately I rarely made it beyond a few hundred feet from the top, because the darkness was standing at the bottom with invisible rope tied to my ankles through years of pretending to be ok with it all.   External things made the mountain sides slippery. So we would slide down, and would get pummeled by falling rocks and break limbs on the way down.  When I fell to the bottom, I heard the same piercing voice… “Did you learn your lesson this time? Are you done?

I can still see the top, and each time I see mistakes made to sabotage myself by believing lies and generally full of fear and misinformed. With each counselor I learned what was happening and why I gave away so much power… I could never figure out how to take the knowledge and put it into action inside myself any time an individual was near me. Most days felt like living episodes of Criminal Minds or Law and Order SVU, because it was not ‘our’ reality, and we were all just there to play the part given to each of us.  Like I have previously said, I somehow inadvertently created a mountain, however naively, however innocently, I gave it the power and took all the blame.

I need to MOVE it or go around it. It has taken much longer, it has involved starting below the bottom, it has been without dignity, it has been hard, but the reality is that this had to happen, because I was supposed to be here for everything that followed.  Either way, I just wanted to be able to support them on my own if I could, this is where my disillusionment came in because I thought this was all taken care of.  I just want to UNHITCH this wagon… I just want to settle down somewhere (preferably near a beach) and to raise kids without being controlled or afraid… that is all I want… not this.

I do not have time or energy to waste on negativity because it has stolen too much from us already.  However, relief needs to come as soon as possible. I have a serious procedure coming up and I will be unable to focus on anything other than survival for at least a couple months. Now… if I was a different woman… I might have given up by now. Giving up is just not an option, but I do have fatigue, discouragement, and disillusionment. I am very confident that this will all end…. eventually. There are times I sit in silence with Rebecca, and we both know there are no answers and nothing warm and fuzzy to be said… much like when we first met, we were sitting on the landing behind the shelter, in the middle of a situation that was unfathomable, tired and shell-shocked.  Then we switch on the jokes and the sarcasm and are able to navigate the emotional minefield for a short time at least and move on.

I think the hardest part is the powerless feeling of ‘waiting’ for someone else to decide what we can do next. People say… anything worth having is worth fighting for… so why don’t we have it yet? lol My friend drove me to Springfield today, because it is now officially getting more difficult to make the drive without getting super sleepy. I met with the spine doctor and had X-rays done. Everything looks great he says, he showed me how they removed an entire vertebrae and where the cage and titanium plate is attached, it looks creepy, but cool at the same time. I do not have to go back for 6 months for a follow up. I have another follow up in a few weeks with my Radiation Oncologist, I guess she will order some other X-rays to make sure all the cancer cells in my neck are gone, and check the site of the radiation… it actually does not look bad, it is just a tan rectangle on the front and back.. more of a sun burn appearance, but I no longer sound like Cher or Stevie Nicks, so that is cool.

During the drives to the hospital, with my captive therapist audience I went down my laundry list of complaints about how ‘nothing’ is working out like it is supposed to… and whaa whaa whaa…. She listened, laughed and gave me some of the best stories in her Boston-Infused-Missouri accent… always a positive and rational word about the big picture, and what seems huge now, is not as big as it feels especially if I put it next to the whole ‘cancer’ thing, and it is all wasted energy to worry about things I can do nothing about right now. What seems insurmountable in a moment in time, is not really insurmountable, but most likely it is something that I need to go through in order to make it through ‘whatever comes next’… I am thinking to myself… “I do not want WHATEVER COMES NEXT” Just sayin’. There better NOT be anything else coming… I mean… Geez O Pete.

She tells me if I could just see how far I have come in this past year, if I could just recognize the power I have inside myself that I would not be so worried about how things are playing out, if I could walk in that strength, and express myself the way I want to, with the knowledge that I know what is right… I would be a force to be reckoned with… I am sure I made some dismissive noise… I never quite see this strong person she tells me I am… and I am exceptional of reminding her of all the flaws and all the things I am ‘not’… lol But when I am behind a keyboard, I do feel pretty courageous and intelligent… or full of crap… haha.

We called my other friend and had her on speaker, and told her we were going to stop by her new place because she got her a house warming gift… Then She asked us both to pray for the exes… She said we both needed to FORGIVE them and to ask God to intervene, touch the hearts of these men… We both laugh… but we listen to her, because we respect her, and because she has been down the road we are both on, and she knows stuff…

This is a very loosely paraphrased quote from our therapist

that I think was said in parts over the better part of the last two weeks: You girls have got to “Keep the Main Thing, the Main Thing.” “Basically, do not allow any person to have that power over you, your thoughts, or emotions, this includes the amount of anger, frustration, and negative energy you let yourself think or feel when it comes to them. The only person we hurt is ourselves when we rehash the situations and the ‘what ifs’ over and over. The main thing is for us to be empowered enough to make sure we and our children maintain physical, mental & spiritual health, and our safety… those are the MAIN THINGS… the rest of it is small in comparison.” She gave us both books to read… I guess we will have a book report due next week. haha God bless her for loving us so much. New topic (remember, I am on Dex & it is Tuesday): lol

Last week I found the first of 5 brown recluses in my house. My immune system would not be able to handle getting bit by one of those spiders, and Kimberly is allergic to any type of biting insect… I do not even want to imagine what a bite would do to her. I called an exterminator, and was instructed to unpack and remove all cardboard boxes asap because they just ‘love’ those things, and wash any clothing or bedding that might be in those boxes… during this process I will still have a risk of finding more. Needless to say, procrastination and newly acquired arachnophobia has overtaken my previously strong urge to organize my basement. My cats literally stay at the top of the stairs and DO NOT even go down there anymore… I would say… that is a bit of a bad sign… but I have to wash my laundry down there… so I just scurry down quickly, pop the stuff in and scurry back up, all the while… side by side my two furry ladies “Princess & Queen Tubbington” watch me… not budging and inch… hmmmm. I am too scared to turn off my lights at night when I sleep and I know that sounds crazy because I do have the good little guard cats.

This house is very old, and there are many vents and openings where they could enter into our upstairs from down in the basement. It is just a level of anxiety that I really wish I did not have to deal with on top of everything else. There are multiple things that I wanted to have done with my house before I go in for the stem cell transplant in June… painting was one of them, but I am told painting or fumes would not be the best idea because of the cancer… I still need to finish the unpacking downstairs, building shelves, and the unpacking and cleaning upstairs. I have decided I need to switch rooms with Courtney, and move myself to the room closest to the bathroom, because I will be probably needing that when I get home from the hospital.

Funny thing is, the power went out in her room and I have no clue why, (her closet light works, just none of the outlets in the room or the overhead light) just last week Kaitlyn & Kimberly’s room was flickering, and there is no power in their closet… The house needs a lot of work… and sometimes I have these remorseful moments wondering if I should have found a smaller apartment, that was newer and cleaner, because at least then I would not be worried about the ‘cleanliness’ factors’ and the astronomical utility bills because of a lack of insulation, or whatever else could be causing the heat & air to cycle rapidly no matter how low I keep it.   It is just frustrating, because I think the landlord was fully aware of these problems, but was looking to dump this house and all the problems on the first sucker willing to take it. At the time, that sucker was me.

I am not saying I regret my choice in the house or the location, because the house is super cute, and we have plenty of room. I just get irritated at my luck with the issues he failed to disclose even when I told him I was a single mom with terminal cancer BEFORE he agreed to rent this house out. And my little nagging issue with speaking up for myself with these sorts of people. No time like the present to put on my big girl pants and tell him what I think should happen, and if he refuses, I guess I will just have to make a complaint to the city hall and figure out a way to get out of this lease and move… which would just be so fun for the girls I am sure… We will see how that goes.

Anyway, I realize I have had less positive and upbeat things to say these days, but it feels like it might be turning a corner again?… at least for the moment…haha, the corner could lead to a cliff though lets just sit back and watch shall we? haha Anyways… looking at the BIG PICTURE… I still have plenty of things to appreciate and laugh about. It is just circumstances being as they are not making much sense yet. I rarely want to go anywhere socially because I feel guilt or anxiety that my attitude is not right. I am also very aware of my weight and other side effects, which makes me extremely uncomfortable in my own skin, and I realize rationally that thinking is really silly because I am the only one that obsessively notices my every single flaw… but there you go. Even with my girls, I do not like my attitude, I want them to see strength and victory, and grace… lately, I am not exuding those qualities. Gosh, what a Whine-Fest… I forgot to hand out cheese and crackers… but hey… I feel better. This is not a literary masterpiece, that much I know for sure. 🙂 I am sure very few of you will make it past the first 3 paragraphs and that is perfectly ok. hahaa

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