Still Here

Just have a ton going on with surgery, a wedding, a move and a how lot of new news and more testing...more news coming soon.

Remembering You

The snowflakes fall as they did the day we first met 15 years ago. Softly kissing the ground and blowing on the wind. It’s like living in a snow globe except something is missing. That night you walked in from the storm, so fierce, you claimed me as your mother and I you as my best friend. You were so cold from the snow but determined in your actions, you sat on my lap as if you always had and answered my childhood dreams of owning you; of owning a black cat who would be my best friend.

Little did I know how close we would become and how true our friendship would be and how much you would affect my life. I sit back now wondering if you know how much I loved you and how I ache for you now. If you know how great the bond between us would be and the hole it has left me with. My heart aches with literal pain as I grieve for your passing. My beautiful child can you please forgive me and remember how much I loved you as we napped and cared for each other through all of the horrible and wonderful times we had?

I miss you purring sounds as I scratch you fur and as you beg for treats of tuna and milk. Your stealth actions always sneaking a sip of my nightly milk when I was not looking. The feel of your thick winter coat against my skin often heating me as well as you despite the blankets or the temperature in the room, so soft and loving. I miss how you curled up on my chest so our heartbeats would sound as one. How you knew where I hurt; and laid there like a Band-Aid trying to sooth my pains and illness as I lay there helpless and alone. I can’t help remembering you, your every breathe and every moment.

I remember your last breathes as if they were my own. Everyone pains me as I think of the glassy look in your eyes begging for care and love. I told you everything as we wandered the house in tears and laughter. But somehow all I can remember is the last breath you took because of me. To ease your pain but only begin the agony for me as you departed into the spiritual world. Somehow I still feel like your murderer though I know you would lie dead today if it were not for me helping you to have some dignity. Some say you were only a pet but honestly you were my best friend for the past fifteen years, never judging and only loving. And yet it was me who had to decide if that deadly needle should help you along.

What if I was wrong and you would be here today? I have nightmares now in my short attempts of sleep. I can’t seem to wonder if I did right by you as I helped end your life and move on to the next. Every breath I take hurts as memories flood my thoughts. If you can forgive me for our last few moments when I held your hand and had to help you go. Everyday I feel so much guilt about the way things ended. If only I knew that you felt the same and were sad to go and leave me too.

I can’t stop remembering you and wonder how to say good-bye to you my best friend. Please remember that I would only do what is best for you and that I am so alone without you by my side. How will I fight my own battle against illness and death without you? I feel lost without you. A piece of my heart missing; but I can’t help to remember you as the snow falls and I recall the day you walked into my life and changed it and me forever.

I am here remembering you but are you remembering me? I love you my best friend, my baby kitten, my child. Know I just wanted the best for you out of my tremendous love.

I’ll always be remembering you.

What Do I Want To Be When I Grow Up?

Seriously this question is a bit ridiculous at my age since I am going to be 35 in a few days, seven days to be exact. But, I find myself faced with this question once again. I am no longer five years old. What spurs this random line of thought? A collision of emotions and a television commercial talking about kids growing up and drinking milk; that’s what. Who would think something so mundane would prompt me to begin looking at my life again and wondering who I am and what I want to be when I grow up?

The question isn’t really that crazy if you look at my situation. At 29 I found out I had a tumor causing a rare disease called Cushing’s. Talk about a horrible experience. I gained an enormous amount of weight which typically would not be detrimental to one’s thinking but I was training for a triathlon. I was not prepared to not be able to walk around the block and to find that despite a diet of “nothing” I was going to gain almost 100 pounds. I had surgery that was supposed to cure me of this random one-in-a-million disease but low and behold I remain sick five years later and am looking at a few other options, all rare diseases.

Cushing’s nearly destroyed me physically and emotionally until I found a way to let myself think it was only making me a better, stronger person. Honestly, it has in the sense of caring for others, valuing what I have and learning to let go of what I do not but I cannot help falling back into a random day of what could have been. Oddly, I help many others deal with their rare or not so rare diseases and find it quite rewarding except when you get one of those people who just will not let anyone help them, including themselves. It is kind of like being an alcoholic, you need to want to get better or redefine yourself; so some people just cannot be helped. During these random days every year or two I wonder what the hell I am going to do after all this is over and when exactly that will be. Having some of your prime years taken away as well as some options for your future is just not something easy for someone to deal with who was successful and “had it all.” If I was still in my former career I would be worth more than a million dollars right now but low and behold I keep looking at my bank account to see if my monthly disability checks have come in so that I can save some money for my next surgery or a shopping spree in order to keep my life going.

I had to fight for three plus years to get my disability and just recently got it. Now that I have it, I find it a good way to supplement my stay at home activities. Online shopping to update my wardrobe is something I am redoing to make my new body look better than it really does since the changes have been so drastic (my mind is still trying to catch up with the changes as it does double takes when I pass a mirror). I often feel the need to shower people who have stood by me all this time with gifts; not the best use of my money but it makes me feel less guilty about having to borrow money in the past and my major mood swings caused by my disease(s). I bought an Xbox 360 to give me a toy to play with and a Nintendo DS for the long doctor visits which usually are a lot of waiting. Also, I have supplemented my book addiction because going out and being around people still makes me very sick. So I can only imagine what a library book crawling with germs would do for me. Don’t worry, I donate them to charity after so it is not all pure pleasure and a waste of funds. Besides, I get to play with people online and chat on the computer. Oddly I find writing a good outlet and a way to let others understand why I do the things I do now since I have changed so much, and besides people really should be prepared for a life-altering illness or at least understand it as someone they know will probably go through one. Writing is just a hobby but who knows maybe I should and will to be a writer when I grow up. I told everyone in high school I was going to be the editor of The New York Times. Not sure that I will aspire to at this age but I am not willing to give up while I look for what to do when I grow up. Anyway, people need to understand that this is not a “poor me” story when it is really about empowerment. Let’s face it, learning to deal with the shit life dishes out is always a lesson we can benefit from. Other than that, I am also trying to save for a house, pending of course the ability of getting someone to offer a mortgage to someone who lives on disability with no real time frame.

Many people think I am such a strong and brave person so rarely do I find myself able to break down and allow myself to feel the misery these diseases have brought me. Hey, two rare diseases is wonderment to the medical community and when people say how strange that is, I remind them I am just a very unique person. Yes, I am better. I am happy, and I am alive and living to fight another day. I should be proud of this attitude. I still want to fight this mysterious opponent but it gets tiring and I find myself needing to melt into a pile of emotions of “what would have been” had I never gotten ill or something along those lines. - Especially when I think about when I am going to get better and what if I don’t. - What mark I’ll leave this earth with as I am not a believer we live our lives for nothing. The universe gave us a life for a purpose even if it is just to make your mother smile or win a Nobel Prize. See, I do have a lot of options and so does everyone else; it is just a matter of how or if we take hold of them. Ha, this is the first writing I have done in months but it feels right. Maybe I should pay more attention to those TV commercials for inspiration.

Not knowing what lies ahead is a very scary experience and even more so for someone who had a fabulous career and pockets full of money (a lot of debt living that life but it still looked as though I had it all). It is funny; I have more money in the bank now with less debt than when I was working full time. I am not allowed to work now and it frustrates me but I also know I cannot possibly do the long hours and not lay back in my couch even as I write. Heck, I have to shop online because the mall is to stressful to my body but at least I found a solution and now look like I want to live when I walk out the door instead of like a bag of rags the maid threw out. I guess once and a while we just need to let it all out, our tears and fears for someone in my position, or we will end up going crazy. People think it is a sign of depression but since it only happens once a year I am going to peg it up to fighting so hard that the exhaustion just demands I take an emotional break to put life in perspective and think about what it is I want outside of getting better.

This year I married the most wonderful man and I know one thing I want is to make him the happiest I can. I guess he would not have married me if he thought I was going to be the “give up” type of sick person or life obstacle defeatist. Let’s face it my condition is very similar to other major life changes and we all need to learn to deal with them. It is just a matter of getting people to see them in the same light and that they can take charge of the outcome; even if I am sick forever I still can make a difference and change myself and hopefully help others at the same time.

As for 2009 I am not sure what comes other than continuing the good fight and trying to maintain the person I am and that is loved by many…at least I think I am. That is the other thing, being in this condition makes you wonder what people think of you and do they still think you are the person you were before all this. Frankly, I hope that they think I am a better person than I was before all this. I still want to make people proud of me and be proud of what I do with my life even if it isn’t perfect.

So the question still remains…what do I want to be when I grow up? I think I already am that person but now I need to find the answer to - what do I want to DO when I grow up? That is the puzzle I am still trying to work out and maybe you have some ideas. I am open for suggestions. One thing I plan to do, no matter what, is to start a non-profit organization to help people in health positions like me facing medical debt larger than the Empire State building and trying to live a good life with a positive attitude. Even if we just help them with the food bill so they can have a healthy meal would make me proud. But right now I need to wait on that since I don’t have the energy to do it all myself…in the meantime, I guess I will keep watching commercials for inspiration and answers to some of life’s questions. I’ll keep making jewelry (or actually do it instead of just design it), maybe start painting again and work on writing to figure things out since it seems to help me gain some clarity.

As far as what I will do when I grow up, I am still waiting for a sign. In the meantime, I will keep working on fighting to gain my health and energy back to make some of these dreams come true.

Old Enough?

I sat in the doctor’s office prepared to hear the usual nonsense about not knowing what to d with me. He was a kindly faced gentleman, which I say simply because he is an older man (somewhere around my grandparents’ in age), who walked me into his office by himself. No nurse to do his dirty work I guessed even though she smiled as I walked by, being more my mother’s age than that of my age. He sat me down in one of two plush leather chairs that suited the office of a doctor who had been around for a while and for the first time in a while I felt like maybe this would work for a change.

I had a book on my lap and he asked what I was reading and why.

I kindly told him “It’s a work of fiction.” Something I had recently given up on like a bad habit since most of the stories sound the same and I liked to learn while reading or at least imagine the real person behind it. “It is summer though and I should give my mind a break, you can tell from my file that I don’t get much of a break from reality.”

“Yes, I see,” he muttered while pulling out his fancy, shining pen and paper to take notes with in my file. “I too like nonfiction works as they give me a sense of learning, even at my age. It is just a break from my world since most of it is history or medical updates.”

As usual I began running the marathon through my file at record speed only pausing to answer his questions as best I could but referring him to doctors for the full story. He listened intently and confirmed some of my facts as I spit them out. “Yes, I see,” he would say without making me feel as though I was someone who was making a tall tale of it just for kicks. Toward the end he began to frown, once again worrying me that I had make another bad choice in doctors and would be disappointed by his conclusion.

“Let’s examine you and let me see if I can see any of the items from your most recent lab reports even though they are more than six months old. You never know what we will find though your tumors are deep so I don’t know what I will find.”

He led me to the sterile, cold steel looking room where he would examine me and I longed for the comfort of his chairs. Oncologist office’s often have the best seating, or anyone who deals with cancer. The rest of my arsenal of physicians’ only sat me in their rooms that mimicked the sterile room I had just entered. Immediately I felt cold creep up my spine and the sign of yet another wasted trip. You see I haven’t had many physical signs of diseases unless you knew me before all of this. My illness really only showed up in my blood and other radiological exams, something else that left me feeling cold and as though I was about to throw up. A feeling I had grown so accustom to that I had to take medicine for the past few years in order to keep food down. Though now it had no effect and I could not digest any food, which does not show up on tests so most of that is me versus them (the doctors a.k.a. judges).

I quickly removed all of my clothing down to my skin as I felt it would be easier if I hurried it up. The sooner I could get this part over with the sooner I would hear news. I guess you could say I went to my doctor appointments with the hope of them being over so the disappointment could start and finish as well. As I hopped up on the table the paper crinkled against my gown and skin. Another thing I hated, why could they not afford more comfortable exam rooms if this was often the most uncomfortable part of the trip. My heart was racing and it felt strange since earlier in the week it had shot so low I had stopped breathing and woke up blue, I have only seen blue babies not people and it kind of freaked me out a bit. Talk about scary. My memory of the early part of the week was shattered with a hard but firm knock on the door, not the type of delivery men or a stranger. I jumped slightly though I knew what was coming and answered his call with a weak “uh huh.”

Slowly he pulled up the files on the computer to add his exam notes while he proceeded to poke and prod me. He indicated that I do have many abnormal glands in size and a number of lymph nodes but could not tell if they were malignant or not so we would need further tests. “What else could be causing all of this if it turns out to be cancer and something besides it as you mentioned that most cancers do not have all of these issues and it could be a combination,” I asked.

“Well it seems most of your health issues started when you had a pituitary tumor but it should have gone back to normal, but in some cases we do see people get worse.”

“You mean it could be causing some of the symptoms and cancer the others?”

“Yes in rare cases such as yours physicians can often put off diagnosis or confuse them because of the complexity of the case, but you know you are complicated already and we know you are not in need of mental health care since you passed all those exams as well.” He said with confidence but rather shyly. Who wants to tell someone they are or are not mentally ill. “So I will include a panel of hormones for you. Are you on thyroid medication?”

“No, why?”

“Well it would appear you have a thyroid problem as well at this point and should be treated but I will test it again to make sure it was not a one-time thing.” He went on in another shy manner telling me I should have my family tested for the BRCA I & II genes since my family has such a high occurrence and it would help me get diagnosed and treated more quickly.

“My family will not do it, they see having so many as proof that we carry the gene.”

“Well you may want to consider it yourself then as we should be able to get your insurance to cover it and if not it is only a couple of thousand.” Pausing he said “If you come back positive, and you likely will based on my exam and your history, then you need to consider your options.”

Unsure of what my options were I started to shake and asked him what he meant. The doctor indicated that at my age I would want to consider a hysterectomy to prevent the cancer, especially since so many in my family were young at onset. My heart sunk. He went on to say that I would have to decide between keeping my organs and getting cancer while attempting to get pregnant (though most of my physicians doubt my ability especially with my chronic medications and illness). “It’s up to you. But if I were you I would seriously consider getting your ovaries out in the least.”

Feeling confused by the conversation I quickly got dressed in my normal clothes while his nurse arranged all of my tests and CT scan of my chest, abdomen and pelvis. I have no idea why he would leave out my head and neck since there was a large quantity of tumors there. Like most doctors though he probably felt it is not his area since I have a neurologist and pain doctor monitoring that area. Which I will never understand since they are so closely related to cancer and this is where it was thought to start.

My head was spinning with thought and I felt a bit like I had been caught up in a whirlwind of information and decisions. I finished booking the tests with the nurse who laughed when I had a severe hot flash in front of her. She laughed “you are just like me.” Looking rather flushed I answered “But I am not nearly old enough for this.” A comment I would think of often after the appointment.

I didn’t understand how one could be old enough to have her reproductive organs removed to prevent cancer but could not demand an open biopsy of the tumors in my neck through a one inch incision. Near the back of my neck seemed a lot less scary than ripping out something that gives life and then would force me to be on other medication for the rest of my life. How come I am old enough to take out body parts but not get a biopsy on tumors which indicated cancer among other diseases?

Feeling sick to my stomach as I stumbled out to my car I thought of all the decisions that had to be made and those that could not. Quickly I dialed my phone to call my mother and ask her if I was missing something because if I was old enough to get genetically tested for cancer than why could I not get a small slice in my neck to get a piece of the puzzle of my mystery diseases out. A piece of me that could lead to more answers than questions for me – I could get a real diagnosis and treatment set up. Instead I am left with a slow growing cancer and unknown diseases both going untreated because I need a biopsy. Why could I not do both? How could I be old enough for all of this disease stuff - not to mention the financial issues of retiring before I was ready or old enough or the emotional baggage that accompanies all these things? Perhaps this is why older people tend to be the more sick ones, they have had time to live and learn lessons to prepare them, if not only a little more than I was at the age of 29 when this started. Not that anyone is prepared but how am I old enough to choose one of the most major decisions in life. And how can I not get a little cut in my neck with permission from me?

Now at 34 I have even more questions and issues than I started out with almost five years ago. One would think the doctors would want to answer some of these questions. How old will I be when I can make these decisions or prepared for them? It is easy for me to help others make this decision but I am a third party not the actual person, it seems so much easier.

How old is old enough?

Baggage on the Carousel

Smack against my skin; thud of the car my father was driving; terrified screams of rape; “I don’t love you I am leaving;” and “we are sorry you have a tumor in your brain.” are all things that have happened in my short thirty-four year old life. The sales clerk at the makeup counter; dental assistant; and other acquaintances cringe with disgust at the baggage life has thrown me as we chat. No, I don’t wander with my baggage dragging behind me for all to see. As a matter of fact I became a good actor hiding my personal belongings for a while until I figured out I could use mine to help other carry their own. Their faces draw blank and somber as they utter “Really, how do you do it?” and still have this bright light surrounding you and smile with laughter ringing from ear-to-ear.

I open my mouth and spill the rest of my journey – another brain tumor, liver masses and another on my right lung with no doctors to treat me since I am considered a rare case. I don’t beg more sympathy but to enforce the depth of my reality, my life. And to nudge them toward the idea that life will always throw dirty, torn bags our way but we can survive. It has to be one of the hardest lessons in life to learn.

You may think I have a “saint complex” to have overcome all of this and brag about it. It’s not bragging but sharing a lesson learned so others may figure it out before they lay near a scalpel that could slip and take their life. It is not my job to play God. There are others like me out there and you can often find them standing by my side either virtually or physically. On websites for patients and caregivers offering support to addicts, people with cancer, sexual predators, drama queens; basically any burden you can think of there are people like me. They helped me realize I have some magic of my own by learning to leave the baggage on the carousel.

As matter of fact, I hate the attention or lack of it because I have been labeled chronically ill, rare disease carrier, and she’s sick. Labels suck! What I do love is the power to show people you can take a moment to laugh, to shop, to enjoy a dinner with family and friends and to fill your bags with things other than pain and sorrow for what you missed or may never have again. You are allowed to feel, yell, scream and punch the wall if it helps. Eventually you need to decide what bag is worth your emotion. Our emotions help us plan the journey we live.

Leaving baggage behind is often the hardest thing in life. Some of it will be the blanket you carried sine you were a small child and some of it will be the people that gave you the bag to carry simply because they could not do it themselves. You sit and wonder why you have to do this and how come they are just leaving you behind like that ratty old gym bag that smells bad. Is it me? Often I would cry and bemoan the need to make a decision when I was the one fighting for my life – not them.

Wait, I have a role in this decision of what bags I want too. The baggage that is best for you and your journey. Sadly it took meeting death to make me realize all of this. Now I carry myself and those who want to help carry me without judgment and filled only with love. Those people allow me to grieve and to love? I left my father with a letter and friends who never called back so I stopped dialing. There were doctors’ who would stop fighting to heal me – more than 60 in all. I had to be the one to severe the connection so I could be healthy and be me.

My carousel keeps passing by with old bags that will never be looked at again and new ones that I will pick up and feel their pain, grief or fill them with happiness. All of this “drama” has lead me to finding myself and finally being happy with the person I see reflected back at me in the mirror.

The baggage carousel has gone around and will keep spinning as long as there are life travelers who have baggage to carry or to leave behind. And now you know the secret – you can choose your baggage.