Sept 26, 2011

So it’s been a crazy few days. I was super nervous coming up to sept 21. That’s when my appointment was to see the doctors at CCI for my options. I couldn’t really focus on my nerves because I was focused on Ben and his nerves for a huge exam. For accountants like him it’s called the UFE. They need to pass a 13hr exam that split into 3days and takes 1-3yrs to prepare for. He pushed through in 1 year and completed his exam and finds out his results in December of 2011, we are all hoping he passes. He did very well, I cant imagine what it was like to have to work full time and then come home to have to finish school work AND help plan his sisters wedding. Thank God the wedding is over and also the UFE exam! The last few weeks were hard on me i wanted to make him feel as supported as possible and remind him that he will be loved no matter how he does on his exam. I felt like a personal cheerleader that wasn’t allowed to have a break, it was a lot of pressure. I know that his sanity was not my responsibility but I almost felt like it was.
Ben’s exam was Sept 13-15, 2011, I spent a great deal of time worrying for him and trying to make sure he was getting everything he needed off his chest. I honestly have no idea if I helped but I’m praying I did.
My doctors appointment kept getting delayed and was rescheduled and also mistaken for an earlier time. It was an appointment to refer to my “possible” options since my last experimental phase one drug stopped working. I was doing everything I could to distract myself. Fill my time with hanging out with friends or family or EVEN taking my mom out for shopping or groceries etc. I realized very soon that it was extremely easy to fill up my time, the hard part was find time for me to feel what I needed to so I could mentally prepare, and emotionally sooth myself. In the beginning of September my grandmother who im very close to fell ill, she is also diagnosed with cancer. Her diagnosis was about 2 months ago. She’s been a little under the weather for a while but end of august beginning of September it started to get really bad.
So started visiting my grandmother often to make sure she was okay, made sure Ben was feeling confident about his exam. Grandmother was stable and Ben finished his exam and felt relieved but nervous for results. Before I knew it my grandmother was staying at my house so me and my mom could keep a closer eye on her. She couldn’t keep anything down, when i say anything i mean anything. Time was revolved around Ben and my grandmother. I started to get seriously worried about my grama, since she decided not to do any treatment due to the fact that she is 79 and scared shitless because of what she saw happen to me. The days seem to blur together and the 21st was coming really fast! And I realized I needed to slow down, I needed to prepare myself I wasn’t ready for the appointment I didn’t even get a chance to sit and think about what the doctors might say. I thought okay for the first time in about a month my mom and my dad (even though they aren’t so nice when they are together) will be with ME and comfort ME and worry about ME just for a single day just for an hour or two! Boy did that day go way different from what I expected. My mom was insanely worried and decided that we had to take my grandmother to the hospital emergency. I definitely agreed as long as my grama was okay with it, she was and that meant something was really wrong my grandmother never wants to go to the emergency! So on Sept 21st the day I thought I was going to get some attention from ANYONE went down the drain. My dad took my grandmother to the emergency the exact same time I had to drive myself and my mom to CCI. The entire time we waited we discussed if grandmother would be okay...... (Its incredibly sad but I actually felt upstaged by my grandmother for a few hours and resented myself for it still to this day)
I was screaming in my head I knew I was literally a wreck going into this “options” appointment. I was emotionally, mentally, and physically spent. I felt and still do feel like I spent my energy comforting and giving attention to others which I truly do enjoy doing, but when I’m about to have a change of my own I needed someone to just talk to and NOT bloodly tell me the same damn thing. The whole your going to be okay they will have something for you, oh how are you doing? And just ask to make themselves feel better that they did in fact ask when they didn’t actually care because they never want an honest answer. I just needed someone to actually see that I was screaming for help and that I wasn’t okay with what is going on. It didn’t surprise me that even those closest to me didn’t notice much.
I spent my prior weeks encouraging those I love most about going back to school or work and even Ben who was yet again going to Vegas, when I felt I needed him most. I love encouraging my friends, if I can help them feel good about everyday life that seems so little to them then I will go to anything that God throws my way to do so. I’m only human and of course I appreciate the kind words and thoughts and prayers sent my way. I don’t get much encouragement like the whole “I’m proud of you” thing, and I know that when I hear it, it feels awkward (because you don’t hear it often) but it feels so damn good to know that someone notices that i’m still here and fighting. So I’ve decided i’m going to do my best in reminding my loved ones that im proud of them. We don’t say those words nearly as much as we should!
Anyway, I saw the doctor was told my situation, wasn’t very shocked at what I had to hear. Calmed my mom down by asking every stupid little question I could think of because if she doesn’t feel like he talked or explained every damn detail my doctor is apparently an idiot. Then drove back to the south side of the city, I was emotionally spent and in physical pain but didn’t tell my mom that. I dropped her off at the hospital and sat on the couch at home by myself and cried for an hour straight. I’m talking massive water works not like a silent just tears coming out of my eyes, a full on very sad balling session, sadly crying doesn’t normally make me feel better so I don’t do it often but I felt there was nothing else to do. I was overwhelmed with the activity in my life the past few months, I was worried sick about my grandmother and myself. I still feel like very few people in my life truly care about what is going on in my life. I thank God everyday for those friends that are so close to me and there for me, I truly wouldn’t have made it this far without their support.
My family has been so occupied with my grandmother that they actually forgot about me and I became a non issue. It was only of course when they caught wind that I was in fact changing treatments and that my options are getting slimmer by the month, that they showed any amount of interest. Why is this? Its pretty simple I come from a family that just wants to know everything about everyone’s business, so they can tell everyone else about that business first! So it aggravates me when they ask, and I know they are only asking to find out information just so they know, not that they genuinely care about what may happen to me.
They will do exactly what they did to my grandmother! They will show their up most support ONLY. . . . . . when you are actually looking sick and acting sick and end up in the emergency and get admitted into the hospital for several days! If nothing is wrong with you, then you absolutely fine, and when you have cancer that is not true at all. When we told the family that we were taking my grandmother to the hospital they all but freaked out and actually asked the stupid fucking question WHY? Can you believe that shit! A 79 year old woman diagnosed with ampullary cancer NOT taking treatment ends up in the hospital and they become concerned morons and ask the question WHY!

So at the end of the 21st my dad of course is the only one that asks how the doctor’s appointment went and what he said and what happening, along with a few friends. My grandmother got admitted at the grey nuns hospital at midnight and the gong show of worrying and being stressed beyond words begins.
I’m still exhausted to this day, my body just absolutely hates me and i’m in enough pain that would probably make my dad pass out. Emotionally I have major issues right now, mentally I cant even think properly, and well you know how I am physically. It’s draining for me be the only available day time driver and my grandmother being in the hospital, I’m picking people up and dropping them off driving back and forth from home to hospital to home to places for food. Not to mention im on the phone constantly answering peoples questions about how she is doing and etc. I have to do my own research on my new drugs in the middle of the night on my piece of crap laptop BUT it works so I truly shouldn’t complain. Right now im trying to work out a proper balance that will allow me to worry about my family and myself without asking for anyone to help or care, so I can attempt to function properly.
So far I am having absolutely no luck and I just want a vacation, I sadly want to run away from the stress the pain the family issues the uncessesary drama and the sear feeling of being utterly alone in this. I want to be somewhere warm, where I can feel the sun on my skin and walk on a beach and smell ocean air. I want to feel looked after and comfortable and NOT stressed. I don’t remember what it is like to relax.
I have felt so completely alone the past month I’m astonished I am talking to people without feeling like its foreign. Of course physically I am NEVER alone there is always someone there. I’ve been at the hospital every day since Wednesday night, I have been with my grandmother comforting her and watching her with company. I talk to about 5 different people every day and I feel like i’m a void of space and time and so incredibly invisible and so so so so so soo alone emotionally.
My grandmother gets surgery tomorrow at some point and i’m praying she feels better and this surgery works. She is so scared and in so much pain it hurts to watch her, and I feel so much for her because I myself have been EXACTLY where she is now! In pain and discomfort and feeling like a burden and asking the question why me and why God just why. Just wanting the pain to stop even if its for five min, just any amount of relief would be heavenly, unfortunately the relief doesn’t come for a few days and you start to wonder if you will ever get better. She is so scared of being in pain and having the pain get worse, if she goes she wants to go quickly not slowly and drawn out. She won’t truly talk or cry with any of the family members except me. My mom went to get tea one day and it was just me and my grama in the room and she started to talk and cry and it broke my heart to know that she was feeling the pain I’ve felt and NEVER want anyone else I know to experience. I love my grandmother so much and I pray she gets better, even for a little while so she can go to Guyana where I know she really wants to be if she passes away.
It’s proving to be a lot harder than I imagined to actually be a patient myself dealing with my own very soon to be life style changes and watching a loved one go through the same pain I never wanted her to have. Then dealing with the family and helping them understand how she is feeling and why she is so stubborn with some things. They don’t know just how scary it is to be in that hospital bed, watching people watch you as you try to rest and wrestle with God in your head.
My head feels like it is about to burst so I think I’ve done enough writing. How do you feel when you’re watching a loved one suffer? When you’re going through your own problems in life and you feel completely alone, how do you cope?