Flashbacks...

Here is a flashback from my memoir writing class...at times I will post some items that are relevant to this blog about my battle. Memoirs allow one to tell your story in a way that reads like a fictional piece but are very much true. Some people believe they have to be 100 percent to the detail factual with exact quotes and written like a report of every detail in your life. In reality they have to be based on the truth and 90 percent true as the middle parts would make a boring book. The emotions and events have to be true but obviously not all is said in the actual events since they are feelings. This is from an assignment where I had to write about an inner struggle...this is from the day I was having a sodium crisis in the hospital...within days of my pituitary tumor removal. It's all true...

I lay there in the neuro intensive care unit with lights flickering and shadows moving around me in the middle of a sodium crash post brain surgery. It is four days later but my sodium crisis has been 24 hours long, if not more. I lost track. My movements are very much involuntary but my thoughts are more than voluntary. I see my mother in the chair wondering if her oldest child and only daughter would die and she would be all alone here in New Jersey to deal with it. She is sobbing and asking the medical staff things I cannot hear or understand. They are just mumbles of incoherent sounds flying around the room like ghosts. I see the fear in her eyes. My pajamas are soaked to my skin and have become one. I can only see tubes and wires attached all over me trying to save my life. I am urinating at least a liter every 15 minutes and vomiting even more in between. I can barely move. I see the lights. I hear the voices. Nothing makes sense to me. I am full of confusion.

My head is swarming with thoughts. I don’t believe in God or anything right now. Will that punish me in the afterlife? Will the universe torture me forever? Tears are rolling out of my eyes and I think that is the only action I am completely aware of with my body. I see my mother praying. I wish for them to tear my flesh apart. To rip me open and find what is making me so sick. I beg them in my mind to either open me up or leave me scarred for life. Or to kill me right then and there; I want it all to end. I want it to end for those around me and for the pain that surges through my body with every heartbeat. I am not quite sure. The thoughts swarm and slosh in my head. I am not sure whether it is the meds, or the swelling of my brain, or just the confusion overwhelming me. I’m not sure who I am asking, all I know is I want to die. Or do I want to live? I see the lights above my head in the hallway and beg for answers but all I get is wishes for it to end. Or were they prayers? I don’t know who to blame. I don’t know the answers. I just want it to end and I am not sure how. I feel too young to decide this and it adds to my confusion and thoughts as more tears pour like floods from my trademark green eyes. I wish the docs would just fix me or end this agony.

Finally my body passes out from exhaustion and I no longer am thinking and no longer feeling the pain. I am cold and feeling wet all over. I look up and my mom’s tears are dried. In the corner I see my boyfriend has come to worry beside her. I think it is over and am filled with relief but still can’t speak or move. Even a few hours later I still can’t speak or move as I am exhausted but the crisis is over. A few hours later I do and I just think I am glad this is over. The crisis is over and I can breathe. For now I can rest and not have to decide the answer to a question I feel too young to handle. Or just not ready to decide the answer too. There are no words, just silence. I’m okay with silence for now. No words, no feelings, no answers just silence. You only feel the relief in the room. It took no words just small movements and glances. With only silence there to hold us together.

...now perhaps you understand why I hate the hospital as this occurrence could have been avoided with appropriate treatment instead of negligence.

Connecting the Dots?

I had yet another visit with the doctor yesterday since I have been having severe headaches and to get the results of my chest MRI. My headaches were debilitating to say the least as I could barely walk to the bathroom and need someone to make sure I didn't fall over. This time it isn't because of the meds they have me on...or at least that we know since the doctor could not answer me as to whether the new prescription would cause vision and hearing problems as well as mobility. I read the hand out from the pharmacist and it clearly indicated that this was a sign I should be examined and taken off the medication. I guess I have to wait until next week when I meet with my latest neurologist who I had when I was hospitalized.

Another issue was the fact that the radiologist never learned the measurement differences and that things can grow or shrink; but in my case grow. As you all know I have a vascular lesion/tumor in my brain located near the parietal and temporal lobes in the center of my head. It happens to lay in between the lobes or hemispheres. In February the neurosurgeon failed to even notice it in the MRI report and in May, June and July they said it had not changed and this month all of a sudden the report states a size and it has doubled since the original report in February (end of the month).

I don't know why but it seems that I have to continually point these things out as well as the fact that I have blood in my urine and have had numerous kidney infections since this all started. It has been a couple of months since the last one but yet again I can tell that one is beginning so I had to request a urine analysis. It seems I have to point out all of the errors they are making and the need for follow up tests. It was kind of ironic that my doctor (primary care) from yesterday said that my cancer enzymes were high two years ago and why no one followed up then is beyond her. She is a bit confused as to why they would show up everywhere but my lungs.

So the learnings of yesterday I had a your clear in the lungs but why didn't we notice the lymphoma possibility years ago...when it could have been stopped. I hope they are in error when they say I have lymphoma throughout my body. Maybe the biopsy is wrong, maybe it is just an infection or an autoimmune disease that they have failed to test me for because I also had to point out that since that was formerly a possibility they never ruled it out but they can just say well we think you have lymphoma or cancer as one doc put it. They all have a different version but they all come down to cancer. Oddly no one paid attention when my various white cells (more than one type) are out of whack. That was more than two years ago and since the numerous rounds and months of antibiotics have not worked it appears it would be lymphoma. Am I the only one who can connect the dots here.

It seems the doctors I see have never done puzzles as children which makes me wonder where they got their degrees or how. Now don't get me wrong I have a ton of respect for doctors but in my case I am getting a bit tired and angry at all the obvious mistakes and negligence in doing clear cut tests that would have given me an answer years ago. I know my doctors are smart and know their stuff but they tell me if I have a fever they don't deal with it or if I have a swollen gland to call this doc but none of them talk to each other so there is no connecting the dots to get a full picture of their patient. Instead they prefer to treat me for their specialty only and refuse to work as a team. Were they not given team building exercises in med school? I know we even had them in college for my Bachelor's degree so I am sure with more schooling they had to learn even more. Confusingly they are all in the same practice so there is no reason for them not to discuss my case and connect the dots. All of my symptoms would make sense if they would talk and just connect the dots but they probably think I am crazy because they fail to look at me as an entire patient.

Perhaps they are afraid of malpractice but all I want is to get better. I hope that soon they connect the dots, do the surgery and the necessary blood work instead of bouncing me around like a tennis ball. I hope they are wrong since no one actually talks anymore it is all paper...don't people believe in playing connect the dots anymore? Anyway it is my primary care doc that I met with yesterday that seems to be connecting the most dots but she is only allowed to do so much because of insurance coverage and her knowledge in certain areas of the human body...she doesn't do cell analysis or surgery or chronic pain management. I wish she did because i am sure she could connect the dots.

Maybe on my next visit I will hand them a puzzle book of connect the dots with a note asking them to talk to each other. on second thought perhaps I will just make a list of docs that I see and ask them to verify the information I provide to make sure i am relaying the proper facts...while await surgery...

Ring Ring - Additional Tests

Gosh, I feel like I am trying to get into an Ivy League here and it's just treatment...I have some more tests scheduled to determine the best course of treatment...I am a very complicated case and person in case you have not read enough of this blog to get it yet!

Tomorrow bright and early and MRI of my head (focuses on several parts) and neck focusing on a lot of parts too! I guess they want some more pics of all the oddities growing in my garden. Next Tuesday I have a full body CAT scan to get even more pics. Should only be a couple of hours in a small tube that feels like a coffin...good thing they will dope me up so I don't freak cuz I hate small places.

Oh and I feel some more nodes are popping out so maybe surgery...gotta call the doc if they come out in the next day or so but I can feel them coming...I really don't want my face flapping in the breeze though...and my man has promised to video it for an archive or for anyone sick enough to want to watch someone they know go under a knife...sick man! I told him it was against my privacy laws under health care rights. But if he can get someone to buy it and pay my bills from all the medical treatments for the past few years than I might consider it. Any bidders?

Last I remembered we only had to take the SAT and ACTs to get into college and write a good essay...what do I get for all of these tests? A Noble prize? A million bucks?

And to think I start my journalism stuff tomorrow...how exhausting...but it should be good, perhaps I will post my writings here for your entertainment! I didn't need to take a test to get into this class!

Any thoughts on what I win for taking all these tests? Maybe I will the most screwed up award - what do you get for that?

Primaries Are In...

Early Saturday morning I got a call telling me to come to the doctor early Monday morning as my results were in and he wanted to speak with me about them. Of course, he has his secretary all so I can ask no questions and am left wondering for the weekend. Since I can't drive or I should say can but feel unsafe driving in rush hour these days I picked a 10 o'clock time as it would clear up the roads and give me more space in case the news was bad.

All night I could not sleep. Tossing and turning and just plain odd dreams that kept me running at a pace way faster than normal. At this point anything is faster since getting off the bed and going to get a meal is energy enough for me to expend. My bed was a mess as I usually sleep in a ball and never toss the covers like a salad riding in the back of the car on the way to a family reunion.

With little sleep and my final dream leaving me in tears I guess you could say I was a mess on my way to the doctor. When I got there I could barely speak and obviously shaken. A nurse immediately put me in one of those famous sterile rooms that is nasty green and white. She left me there with the door open as I watched patients walk by my heart raced even faster with each one. The doc walked by and saw me on his way to see another patient...he stopped in the doorway and said would be right back and he would explain everything. I am not sure if he meant it as a comfort but it made me think even more. Anticipation is a bad thing when it comes to doctors offices. You think by now I would be used to it and able to do just about anything. I brought my book, iPod, and Nintendo DS to entertain me but my brain was swimming with thought and i could not finish a sentence or even understand the movie in front of my eyes.

A few moments laters he came back. the person before me only had allergies and he gave her a sample to try and to call back if she wanted a prescription. He must have not closed the door all the way since most people are not major cases that wanna hide. The doctor was very deliberate when he came in and shut the door. It seemed to slam as I sat there trying to focus on his mannerisms to detect any notion of what he would say next. He was slow and through in his description of the tests and his conversations with my other doctors (the surgeon, ultrasound tech and my primary care). He went through the biopsies one by one and since there were only two it took a long time as if they had done all 40 nodes...which we now know there are more. I guess the news is that I don't have tumors...just very enlarged lymph nodes that are spreading like race cars on a track. I started a month ago with three and now have at least a hundred from my clavicle bones up to my eyes. At the end of the test he told me I had some rare cells and they there looked to be some signs of lymphoma which would be my diagnosis. There is a one in a billion chance it would be a rare disease that is even more crazy and eventually causes much suffering and death since there is no cure so I wasn't sure which would be worse.

So anyway, it looks like lymphoma. I have to have a couple of more tests, CAT scans of my chest and abdominal cavity to see how far they have spread as well as deep tissue biopsies in my neck and face. He tried to gently explain I would have one surgery where my face would be flapped open on one side and that they would use nerve monitors and all the things they could possibly do to not leave me with a paralyzed face since the surgery is in such a sensitive spot. The other would leave me with a 4 - 5 inch cut in the other side of my neck to get at the others that would be able to tell them more information about the type and what treatments would work best. He doesn't want to scar a 33 year old face so we are waiting for one to pop out closer to the skin in the next two weeks and if not I will have surgery anyway. I will have both surgeries and likely some taken out of my chest and abs for additional biopsy. I'll still end up with a scarred face and he hopes that maybe chemo or radiation may shrink the nodes in my face, neck and head. Oh, did I mention that my hearing is at stake too?

It was a lot of news to digest and each day more comes. I am tired with illness and emotions so I am sure to add more to the story as it goes on or as my brain becomes less foggy with fear and confusion of how this can be happening to someone so young and supposed to be at their "fun time" in life.

In terms of fun, I ordered a game for my Nintendo to entertain me in the hospital and during my long docs waits so I am off to get it...more later folks.