Bag of rocks, or.....

So I am finding it hard to bounce back from appointment days.  I have to find a way to mentally prepare, maybe be super good to myself the night before.  The morning of start meditating, dance to an old song that really makes me happy or maybe I should buy special panties to wear on those days with funny sayings on the ass of them so I have something think about as my ass is hanging out of a gown or hell maybe I should take a few stiff drinks before I go.

I will let you know what I come up with but there is a definite need to do something.  I swear I feel like I have been kicked in the proverbial nuts every time I am walking back to my car from having had dealings with our institution of health care and or the people in it.

Keep in mind I do come from a health care setting back ground so I realize I may pick up on some things that others wouldn't but collectively I am sure I am going to get you laughing or shaking your head in my retelling of what has just been a short journey so far of a few months.

I could start with the morning of my surgery, when the fellow comes out to get my back ground information and make sure I have a full understanding of what procedure I am there for ends his spiel by asking if I have any questions.  I said actually I do.  I question, "If I was supposed to be so careful of doing anything that could rupture the tumor I have in my bone up until now, what will you be doing after you cut into the tumor to ensure it wont spread through out my body?"  His response was, "Ummm, no one has ever asked me that....I don't know.....I will have to go ask."   To be honest, I really didn't mind this....at least he was honest about not knowing and I knew he was going to be with the surgeon but he was a fellow and I thought he should have known.

It certainly wasn't as pathetic as the visit to the radiation oncologist, when the resident came in before hand seemingly in her mommy's big high heel boots because she was literally tipped over as she walked into the toes of her boots that were clearly capable of picking her nose in a pinch.  She stood in the open door way, whipped out her lip gloss and quickly lined her lips in pearly pink about eight times so much so that I wondered if the shit was going to drip on me when she got close.  She then went to the alcohol wash dispenser, pumped so much in her hands and then proceeded to touch all my lymph nodes around my face and neck and hairline, dripping this crap everywhere......she actually wet my hair with this stuff it was burning my throat and eyes.  I wanted to explain to her how the alcohol wash actually worked, it needs drying time on your skin and contact with any germs to actually kill anything.  All she succeeded in doing is drying out my skin.  She then pulls out her stethoscope and puts the head of it over my bellybutton and on top of the knitted sweater I was wearing and tells me to breathe in deeply.  I ask her what I she was listening for, she replies my heart.  Well for starters, why do I have to be breathing in or out for my heart sounds.....that would be for listening to the clarity of my lungs and I doubt she was going to hear much at my belly button.  But here is the kicker......she didn't have the stethoscope in her ears....she wasn't hearing a freakin thing and the whole time she was acting like what ever the hell she was hearing was just fine.  I couldn't take it any more and laughed and pointed out her mistake.  She responded that oncology wasn't her "thing" she was really studying to be a dermatologist....if I had any skin issues I wanted to address.......

Then there are the volunteers, bless them for their kindness and willingness to give of their time.  I really don't write this mean heartedly, it actually gives me a giggle or two.  Every time we go into the cancer center, I say we, because my supportive husband is with me for every appointment....we go and have a seat.  It isn't a moment before I see the volunteer eye us and quickly ready a snack tray of cookies and things and nervously make their way over.  They have a hard time, especially the younger, newer volunteers of being able to build up the courage to even make eye contact but they bravely shove their tray in front of my husband and ask if they can offer him a snack or get him a tea, coffee or juice.  He thought they were so attentive and kind and I was just enjoying the whole thing.  He looked at me and asked me, after the volunteer asked him for the third time while we waited if he would reconsider and take a cookie, why I was now quietly laughing.  I said look around the room, you have a shaved head (by preference) and I haven't lost my hair yet so I don't look sick.  They think you are the cancer patient. Next time take the damn cookie so they feel like they are doing their job!

Then there are there is my haematologist, and her nurse.  I am finding it most difficult here and really make my opening comments with these visits in mind, as they are the hardest hurdles to over come and some times take days.  My haematologist is very clinical.  I mean this in every sense in the words.  In the health care setting, this a professional way of saying she has the people skills of a bag of rocks.  Her nurse on the other hand is the opposite and tries to make up for this by being touchy-feely and pretends to know exactly what I am going through.  I don't think I have gotten though a visit with out her rubbing my back.  I want to bitch slap her.
Ok, back to the doctor, here is the thing.  If I could find a way to build a relationship with her that I could at least have the confidence that she is skilled and that she is committed, I would be completely ok with her lack of being human.  I really would.  I have tried a few approaches to no avail at this point.
She throws out survival rates that are awful, and I have to pull her back into the room almost to finish asking questions sometimes.  I asked for example, through my journey of fighting my cancer, how many stem cell transplants can I under go in my total course of treatment?  She tells me they will harvest enough for three but if she feels I don't get enough time out of one remission, clinically she doesn't see the point in continuing.  Dead air.....no facial expression.....nada.  I then push on wanting to bitch slap her at this point or pull her hair and ask.....at that point we will then do what?  Clearly she isn't in the mood to talk to me today and clearly I am edgy enough because I am white knuckling the chair so I don't get up, as I now see visions of myself strangling her with her own braided hair.

 She then tells me the appointment was clearly to ask how I was doing on the meds she sent me home with from our last visit (on an extremely high dose)......a freakin month previous.  I am thinking this is her way of shutting me up so she can move on and I am thinking hell, good thing I didn't have any serious side affects......A month is a little long....you think she could have said....we will see you in a month but email me in two weeks if you are having issue for example.  Hmmmm or is that just how I may try to build a relationship or even a false idea of, "Yes, I really do give a shit".  I know I am tired and really still dealing with the fact that I am sick and trying to accept it but this woman is doing nothing to be supportive or make me feel like she is committed to my care.  I have never heard words like be strong, we will fight, we will work at this.  I just hear the negative.

There are visits that the information is hard to hear, and for that reason I take my reactions to it upon myself and blame my mind set or the meds I am popping like tic tacs but many times, it hits my husband just as hard how unfeeling and really unsupportive she is.  The she leaves the room and leaves me to her nurse.  Her well meaning nurse, that wants to talk to me like I am 5; can't answer any of my questions and even laughs at them in disbelief that I have thought of them in the first place because no one has ever asked her them before and she can't answer them.  I want to remind her that I don't have a brain tumor and all I have to do these days is to think, especially when my doc tells me I am dying every chance she can.

I feel like I have gone from WOW, what you have is a cancer that is really rare and unusual.  We have only ever seen this once before here, I will have to meet with others and do lots of research and consult with other centers......Which although was frightening to hear all the facts, I found comfort in hearing that others would be involved and I heard some commitment and maybe even some excitement at being exposed to something unusual in her career.  To going to, well, I haven't heard from the other centers, I don't have your blood work here, to barely answering my questions.  Have I gone from WOW to too being too much effort?  I have to find a way to find out if it is a case of.... bag of rocks or no skill.... all without offending and burning a bridge but I need to do it quickly.

As quickly as I have to find a way to better prepare myself mentally for these appointments.  I would even go as far to say that finding a way to deal with my own reactions to my caregivers is more pressing.  To say they are a downer is the ultimate understatement.  I want and need so badly to trust in my caregivers so I can focus on myself both physically and mentally and help my family through this and best prepare them for what is to come.  The fight of my life.

So, it is cancer.....

I am not an uneducated person, some would even say I am quite intelligent.  So why, when I was told I had cancer did it take so long to truly sink in. I am no stranger to the information I was hearing, or seeing people receive it for that matter, but this was me.  They were talking to me.  The scans I was looking at were of me.  Now maybe it was because the information came to me in bits and pieces and then hell, turned out to be misinformation and scarier information. "You have a cancer we can cure.....to Ooops.....you actually have something really rare and not only are we unsure how to treat you, you will probably die."

 As a matter of fact I still have days when I am trying to decide how I am going to tackle this journey.  I am told I can't beat this cancer, this means nothing to me, I will beat its ass if that is what I choose to do, or will I learn to let it live with me? A symbiotic relationship if you will.  I can be good with long term relationships.  I can share, as long as it doesn't ask too much of my body and of the people I love.   I could always name it and treat it like my counterpart, OR turn it into my arch enemy and kick its freakin life- stealing ass.  It is far too soon to know what my approach is going to be.  I have a little time to decide.....while they take their good ole time trying to decide how they are going to treat me.

Becoming a patient in the health care system is a nightmare at best for me.  I know, it is what we have in place and with any luck will save my life, but the gaps, the dead weight, the people that find themselves there who have no business being there.....well that is where the humor will come in because having come from a health care environment I tend to notice the things that just shouldn't be and I will be happy to point them out to you for your reading pleasures.

This is my first post of many as I document my journey.  I can't promise it will be pretty.  At times I am sure it will get foul, and I wont apologize for that because I know you will understand.  I promise to tell you things like I see them with honesty and even sometimes humor.  I will share with you my fear but through this you will also feel my strength.