Tuesday, May 22, 2012
Over the last few days a rash has ominously spread around my neck, adding a bit of skank to my brand new chest tattoo. The rash started before the ink, just to be clear, but it was a small area toward the back right. Now it has grown and if I go in the sun my entire upper body itches like crazy. This past weekend some of the fam bam came to our house, and we all drove to Yucaipa to cheer on Paul's little brother Thomas while he kicked ass in a soccer tournament. By the end of the first game I had to hide in the van, Paul got me Benadryl, which coupled with all of my other meds completely knocked me out. I was so disappointed I missed Thomas's team winning the entire tournament! I told you he kicks ass! So now I am covered in this itchy rash, which is a possible side effect of the Votrient, with no appropriate doctor to contact. Being that I just moved I don't even have a regular GP! I just left a random urgent care where they refused to get involved, apologetically telling me all they can do is send me to the ER. For a rash?? I want to be angry and upset, but honestly I think Dr. Barth really did just move on to private research, and although I completely disagree with the way he went about it, I thank the universe that I was sent to him and he completed the testing and prescribed me the medication before closing up his practice. What would the alternative be? Continuing to wait around for research to catch up to necessity? Dr. Barth may have upset me by the way he abrubtly cut off all care, but I am going to make the best of the knowledge he was able to impart before parting ways, and move forward with the treatment plan he started me on with another doctor willing to be as much of a maverick as Dr. Barth was. I think the entire debacle honestly just hurt my feelings by reminding me I am just another chart to rush through, but you take the good with the bad and do the best you can. In this case, I now know much more about my tumors then I did 6 months ago, and can continue to be hopeful that the Votrient will fulfill it's intended purpose. In the meantime I have to get these ugly blotches under control! Quick update before I repost this: My neurologist has already set me up with a new neuro-oncologist. I spoke with his office today and they are working on my records so they can get me in as soon as possible. They said they want me to go to the ER and have the ER call Dr. Barth about the rash and ask what exactly I am supposed to do because this new doctor has not even consulted with me or read my records yet and cannot be expected to deal with an off-label drug with no information. The rash is contained around my neck and only bothers me if I go in the sun, skin rashes and heightened sensitivity to the sun are normal side effects of Votrient so honestly the ER sounds like a huge waste of time, but I don't want to start out this new relationship by ignoring the doctor's first recommendation, so tomorrow I will go get checked out. I will no doubt sit in the ER for hours and they will say "See your doctor," and then send me home. "Do what I gotta do to do what I wanna do" as my BFF Adria always says!
Monday, May 21, 2012
Every morning I am awakened by a sudden vibrating under my pillow. I turn over and smack my alarm, then grab my pill organizer and choke down 4 tablets of Votrient. I turn back over and curl into a ball, ignoring the nausea that hits in waves as the medication dissolves. I fade back into my dreams for what seems like only moments before my babies crawl under the sheets with me and press themselves into the shape of my curve. I inhale and absorb the warm light breaking through my blinds before starting another day. I go on about my usual business of being a Mommy, cooking up eggs and buttering toast, making beds and rotating loads of laundry, swiping on a thick line of black eyeliner and primping my newly chopped short hair... I live, but since I have started the Votrient I have had a bit more of a bounce to my step. When I look around my new house I think I may actually get to grow a bit older in it. When I eat meat I actually worry about clogged arteries. When I look at my family I don't wonder who is going to take my place. I know the medication Dr. Barth prescribed is only theoretically going to slow my tumors down, but the simple concrete act of swallowing those pills every morning has made me feel empowered, as though I actually have a fighting chance at just a bit of longevity. I don't know why I ever bother to lie to myself, or why anyone would instill false support in a patient in my circumstances, but my neuro-oncologist mailed me a form letter to inform me his practice is closing. What the fuck? Yes I said it. I saw him not 3 weeks ago at which time he told me he wanted to follow me personally, and that I would need to have some specific tests done as time went on, not to mention when he first prescribed the drug he told me it was something really new and special to do this testing and he was excited to be able to attempt to help me. At our last visit he had his nurse draw my blood, and told me to schedule our next appointment in 8 weeks. Surely I recieved this letter by mistake? Perhaps it was sent out to all of his patients, but he would be contacting me for further instruction? I called first thing this morning to find out. The staff was completely apathetic! Yes, his practice is closing. No, he wont see me one final time. Yes, he told me to come back in 8 weeks but he made the decision to close his practice a few days after our appointment. What am I supposed to do? Please refer to the list of random yellow-page copied generic neuro-oncologists we sent out with the original letter. He basically told me, "I said Good Day!" What the FUCK. I emailed my regular neurologist, who referred me to Dr. Barth. His PA agreed it did not seem right and let me know he would speak to Dr. Duma immediately being that oh I don't know I'm on freaking targeted medication for uncountable CNS tumors and now on a medication that affects my entire body with absolutely no official medical supervision by the appropriate type of physician!? Absolutely unacceptable. I asked Dr. Barth's office if he can email or call me back with specific final instructions and guess what the response was? "We cannot confirm he will contact you." Wow. As I told his office I will be contacting the medical board and whoever else I need to contact to make my voice heard about this. When I hung up the relay messenger this morning I had a knot in the pit of my stomach. All of the hope I had built up surrounding this doctor, and the things he told me, and the testing, and the medication, getting it approved and taking it every day... Did he simply prescribe me false hope? All of it seemed to evaporate before my eyes, and I couldn't help it, tears welled up. I felt so defeated by my fears and once again betrayed by my body. Since my brain was so swollen last year I have yet to regain complete mental clarity, and I feel like everything around me is a haze at times. When faced with a heavy heart I want to retreat to the ease of sleep and blankets and care takers, but it is not an option. I refuse to crawl into bed and give up. Now, I have to stop ranting, think clearly, and take care of myself FIRST. Dr. Duma has already recommended another neuro oncologist. I need to research him before I share about him or decide to see him. Dr. Duma's PA that always has my back said that he is really good. I will have all medical records transferred over by the end of the week and get an initial consultation scheduled. I tend to choose doctors based on recommendation, similar outlooks on treatment, and then gut instinct once I meet them. So we shall see. We shall see.
Tuesday, May 15, 2012
"I ams what I ams" I posted online shortly before laying down on a tattoo table for my latest piece. As the needle hit my skin the permanence chased away all doubts. Why would I want my Nani to shake her head and the Tish to purse her lips every time they see me? I wish they wouldn't, but understand their opinions are more socially acceptable then my own, and so I accept the comments as a form of continued masochism. The sighs and head shakes are nothing new, and I wish they didn't happen, but I have to be who I see myself as, and not who everyone thinks I should be. I should just stop here and clarify that those who love me really do so unconditionally, and it usually stops at a simple, and possibly well-deserved head shake or off-hand comment. The head shake is simply conveyance of a complete difference of opinions. We all know why. We all know why I get them, why it isn't going to change, and why it doesn't matter. Life is temporary. Skin is temporary. I can tattoo myself with any and everything that catches my fancy, whether I have a deeper meaning as I did today, or I simply adore a design so much I must absorb it immediately. The ink becomes a part of my skin, but not really a part of me. My skin will decay and I will most likely live on in ways that nobody would ever recognize. I have no control over when or how, nor do I control how much pain I wake up to daily, or how often people stare at me when I lose my balance as I walk, or speak too loudly, or just mystify them with my never ending flow of words. I control nothing, but my skin is mine, mine to scribble on and pierce as I see fit. If people are going to stare, I may as well give them something to rest their eyes on beside my scars. Beauty is relative, and when I color in my own scars I take ownership over my own pain. They are mine, the pain is mine, they ground me in this shell and remind me that I have been places and still have places to see. I'm not done... not even close.