Trust

About three years of cancer, and with that the disease is accompanied by weekly doctor visits, hospital stays, sickness and health and systems. As you have perhaps read here, there is also the many more trials and tribulations, many more pains to come before the healing. I have recently surmised and think the reason I’ve been overly plucky about things lately, is due to the time, the never ending idea of which I will have a lifetime of irritating questions such as how are you and what’s the update, when I’ve answered it here, given it to them in emails and responded to their baseless texts. As if it is not enough to deal with having the lows, the lowest lows to highs, and the management of information to the outsiders. Do you really want to know the deepness of my battle? Do you want to be laying in the trenches with me while I watch the the failures and man these hopeful successes of which I guard like a soldier at a water tower in the desert? I want my calm back as I AM positive on this newest road, extremely positive, so I am even more guarded and more irritated by the shit that people do, which create stressors within my attempts at calm and healing. I am supposed to be keeping the calm right? I am terribly sorry this blog is too fucking sad and difficult for you to read. Really? It’s sad for you? Oh, I am so sorry. Just so you know, it is the only thing that is easy for me in the way of explaining how I feel. So, when you ask the question, get ready for the real answer, and read it here before demanding more news. I’m not answering questions anymore in person or in a two line text because “you can’t handle the truth”.

So now, it seems to me the inquiries are selfish amusements of making themselves feel better about Jen’s cancer. The last few posts have tarnished my calm and reality. I have paused in writing because of behavior that I cannot control, behavior which I’m supposed to ignore. I’ve realized I have become so irritated by this because of the duration. I’ve simply had it, had it with the questions, and please make no mistake, it is not with my champions or heroes at all. I continue to be awed, inspired and loved by those who know me so well, those of you whom I have met out there in the great blogging world, who are close to my heart, and know how to behave in the face of difficulties.
I am sorry the realities are too hard for you others, though I’m not replying a general ‘okay’ to a ‘how are you’ text, and I’m not giving anymore goddamn details about UCLA because I’ve written a letter to everyone on my contact list and invited half of them to read it here. It’s not the years ahead of cancer that is frightening, it is the years ahead of managing information to friends who have made themselves outsiders because they are incapable of listening. So now, strangers who have become family, read my words with compassion and interest, wonderful women I met at the pool in Hawaii are more updated than the people in my life that claim to want to know how I am yet only use FB as a meter. I ignore their texts, because honestly I don’t want to use my limited energy spending time with friends who have no fucking clue about what’s going on because they are either too sad or too lazy to read my cherished words here or in the email update. What the fuck is wrong with you?! You don’t ‘miss’ me because if you did, you wouldn’t need to ask the question about what is going on with the LA drug trial and wonder when I am here or there. Besides, my beautiful Psychiatrist gave me the okay to say ‘shut up’, or simply not respond at all, and my close friend told me to tell them to just ‘go away’. Thank Goodness said Milo today, when my friend said that! Out of the mouths of babes…

And so to those that truly care….Since about March I have been traveling back and forth from Seattle to Los Angeles participating in this drug trial. Things are up, they are down, my heart beats louder as my skin weakens where I’ve lost to much weight. The flights are easy but the travel is, at times, difficult. I want to see friends but too exhausted to make the plans or leave the neighborhood. My newest difficulty as of late is the searing, most intense pain that just developed in my arms. It is making it more than challenging to write on the blog or text. The newest mets seem to spring issues on the playing field, solid stances are ready but throwing the ball at cancer’s newest fling is out right dangerous. No little love notes, again. The course of communication has shifted me onto a smaller field. I am trying, working hard, and asking for what I need, even amongst the chaos of this affliction. Currently, I am in Seattle, healing in hospital. The pain meds make it so that I stare at a screen for an hour before I can write anything, Dilaudid, is not the drug of choice but nothing else seems to get the job done quite right. And now we have an Au Pair arriving soon, so I am afraid the poor girl is going to think she is headed into a crazy house. The timing couldn’t be worse, I want to feel better for summer, play with Milo, enjoy time with my hubby and help make the house look beautiful for our new guest who is to arrive and to assist in raising my son. It is time to turn things around for my family and I. Make these writings meaningful in some way. I want to trust in my healing, I want to write, to look at my hand dance upon the keys of a real typewriter. I wish for my complaints to disappear and my husbands breath become clear. I want Milo to play, be okay.

Ritorna me

Back home and gone again, but my family will ritorna me….

The trip home was actually as expected. I had a feeling my lovely doctor would want me in his care. They all did, the nurses embraced me with such love and adoration. They ‘had’ me during the week. Milo had his mamma on the weekend. My husband held my hand, family and friends connecting, for my short visit. I received healing from all around me. And what such heroes I have surrounding me.

Really I was selfish though, and just wanted to cuddle up in Milo’s love, as he looked up at the nurse in the hospital and said, “mamma’s boo-boo, go bye-bye”. Are all two year olds like this? I’m afraid his compassion, his understanding within my honesty of how our life is, will cause him too much sensitivities, but I don’t think so, he has a feistiness and happiness that aglow his sadness for missing mamma. I sort of enjoyed the way he threw my small pillow out of the luggage when preparing to my return to Cali. He didn’t want me to go, but knew I had too and that he will be on an airplane to mamma soon. I know things will be as they shall, so I’m ignoring the books about children and coping with this sort of situation. I feel they are fear based, mostly, and condescend to the brilliance of the child’s eye, and mind. We are learning as we go, and being taught by so many around us, with their enveloping prayers and simple thoughts.

So for the return, I went home, played with the little man, had an unbearable pain battle, admitted to control and care for it, listening to the MRI’s tell me I’m relatively okay, no fears of spinal cord damage, just pinched this’ and that’s and general bone saga’s. With that, I received the go ahead to return to my LA houses of trials and trust. Thankfully! No more step backwards, I wanted to move forward with this…I have a feeling, a feeling everything will be just fine.

Back in the sunshiny state, solo mio. Still managing the pain, new ones, old ones, but made it back with divine help along the way. Even today, as I found myself dropped off at a cafe that was closed, it worked out, had a great lunch somewhere else, got a ride, used the Internet and now it’s nap time.

Going back to Cali., Cali., Cali….. (Part one)

Though not far, it seems forever and a day away from my son, my family. Los Angeles in February is not a bad place to be, especially coming from the Pacific Northwest…80 degree days in Lalaland. And this is where I will be in my attempt, no quest, to heal. I hit the high road, took this chemo jail on the freeway, headed south towards remission, or control of this fast moving cancer. We are looking inside the houses of another doctor and a new treatment, we have a revitalized hope.

My amazing doctor at home, amongst amazing assistance at home, found this trial. Found me a drug trial, another try. They are all trials though. Everything is a chance, really. Drugs that are supposed to work don’t, and may the chances be the cure to an easier life, physically. I have a great doctor here at UCLA. The drug trial world is a bit different than ‘normal’ chemo jail. Though the house has less comforts, more chaos, more advanced patients in my age group. We are all underfoot, and everyone seems to be on a different path with their treatment. It is rigid and there are less comforts, such as a blanket warmer and HIPA laws seem to be thrown out of the window. My hope is that they are just spending more money on the drug and trial than the little comforts. My hope is that I win this leg of the race and can donate into trials to help those of us in pain have an easier time, and experience being here.

I had my first dose yesterday of this bright blue pill titled, LY2835219. Hmm what should we call it…I wonder, so I ring my partner crime in this sarcastic naming process… Some phone # songs from the late 80s came up, but I settled upon Lenny’s Little Blue Pill (Lenny being one of my million nicknames). It has taken a solid five weeks without any form of treatment to get me here, so I’ve risked some serious tumor growth which occurred, yet finally we began full schedule on the drug protocol and now I’m in such pain, I can’t even think about what city I am living, the pain is so strong. I am displaced yet feel comfortable where I am, steeped in the hopes of a brand new little blue pill. Though I ask the question, how can a mother live so far from her child, especially with my fears of longevity taking hold. Life is a series of decisions that challenge one’s soul. The choices we make can inflict either chaos and sorrow or hope and healing. I’m figuring ‘Going back to Cali.’ and LL Cool J has been part of my world since high school, I’m not giving up on taking life’s chances now. Never look over your shoulder as your path takes you forward, for it will never continue to move if you hold your neck sideways for the ride. Be confident in your choices. This is what I was told by an old sage of New York city’s east village. I still believe him, I just didn’t know the wisdom would take so long to hatch.