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.

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The answers to curiosities are not deserved.

Curiosity steals my breaths and my energy within the wake of your inquiries, a lot of people are not concerned with the details lain within the answers, but just that they have acquired the data. Is this judgement or survival, to demand respect of my hearts broken will and time’s elusive answers. Now go and be, sit in front of the TV and pretend life is the false betrayals you watch, with that broken clock. You use too much power, and not enough thought. Your presence has shrunk as you follow a stranger’s world.
You do not want to know how I feel, yet you ask, you ask a question, and I am too tired to pretend, have no desire to lie to you, my friends, family, child, love. I don’t feel good and I just want to be tucked into bed with some soup and be told its going to be alright baby. Instead, I have to listen to this from family, and watch the kids stare at me. They don’t know what to say, so it’s my fault for not being stable enough to take a full sip of water.

And so it goes….She asks, “how are you Jenny!?
My reply, with weathered shoulders, weary eyes, and glassy gaze: “I’m okay, I’m very tired”.
She remarks, “that’s great! I hear you are relaxing a lot.”
My brow furrows, I look up and mutter something like, Ummm. No, my days are spent at doctors offices, I’m exhausted and I barely have energy to be with my child. I wouldn’t say that was great or relaxing. She did an Elaine move and exited the conversation, I didn’t pretend to care.

Delusions. We are deferred from the aches in our loved ones lives, because it is easier to live with delusions. it is so easy to have dialogue or a base comment over Beyonce’s ass, or somebody outside of the fray’s baby (kanye west maybe, some suri poor girl). In fact, we received a baby gift today. Milo just turned two…Are you effin’ kidding me? I’m supposed to now pretend to be grateful, because, they don’t know what to do. really. Well, neither do I, As I fade and perk up, fade, and then feel strength, I wonder how people go through life so unaware, so completely unaware of the impact their personal fears or denials, have on us, the truly wounded, and how they don’t even ponder that it’s rude to saddle me with stuff, when I am limited in many areas right now. Have I mentioned that I can not lift my child? Why do I want to carry around your 2 year late gift. It’s rude, maybe, but maybe not. But apparently, I’m a judgmental snob, some chick in 2009 told me once. I rolled my eyes considering the voice it echoed from. Well, at least some of us are keeping checks and balances on how we see the world, our friends and family. I may judge, but I certainly put forth energies for healing rather than faking or taking energy. The snob part is of no matter, maybe she liked my fancy jewelry, whatever. I’m supposed to care about that. I’m almost 39, God-willing.

The moral of my vent. If you ask a question, expect an honest answer and be prepared. If I ask for questions to wait before more data comes in, than don’t tell me you will pick on me just in case earlier than expected. Who do you think you are? Why does anyone aside from my husband child have the right to know my journey?
It would be lovely for those I’m referring to who of course have no access to this blog, take a giant step back and live a full day in our life. You say you want to help? Well okay, let me stab you in the chest and spine, dope you up so you can’t eat, than make you sit in a fucking waiting room for 3 hours and try to read your kid to bed while you are physically falling asleep…wanna come? Wanna see how mother effin’ relaxing that feels. Didn’t think so, go back to twittering your false idols and just maybe leave me out of it for a bit. It was nice to see you though. BREATHE……..
Okay that rant helped. Peace out.

There is always enough energy for joy.

I had a giant smile on my face when my dear friend sent me a text that her baby girl arrived yesterday morning. I was so happy that I think it surprised Milo and made him clap, smile, and jump up and down. When I asked him to pose for a picture for the new baby, he blew kisses. Happiness is contagious. While, I am itching to jump on a plane and hold this lovely little one, bask in the glory of new life, I know this time is for their family. So I will wait patiently and let the joy fly back to them. We send our love and wishes and we can blow kisses from a far.

Today, it is this lovely child who inspired, watching the reaction of my baby, watch me, gave me this warm feeling and wonderment. Where does it go, that glory and warmth of a day a child is born? There are babies being born everyday into miraculous circumstances, why do we let go of that and allow stress, exhaustion, and the sorrows of a brittle world seep into a lovely one…. I suppose this is how it is, good days and bad days. I think the smiles of today will keep us going for awhile. And while I always have questions of why and how, I hold close to my heart that there is always enough energy for a joy, so we sprung up and danced with delight. Mazel Tov

There is always a sad passage to every story

It has been difficult as of late. I’ve been writing but not here. Writing letters to my son, wishes for “if and only if” the time comes, letters to my husband, journals about my hopes for Milo. So, yes I’ve been writing. When the pain comes, doubt filters into my mind. So, I wonder if it is the end to my story nearing, the devil on my shoulder telling me to be angry, or just the damn radiation that is doing in my spirit. I hadn’t read much about how awful the radiation feels, except for the skin issues. The ironic part is that my skin is fine. Perhaps, it is the strength of the olive skin, the olive oil of which my mother swears keeps her youthful. My experience I guess, much like this whole cancer approach my body has taken, is a little bit different. Exhaustion doesn’t seem to be a strong enough word to describe the level of tired I feel. I cry a lot, and am in pain. I feel as if my insides are burning. I can hardly read my son his night night book because I am more tired than he is by 7pm. When my pain meds wear off, I have severe sadness, no energy, fevers and I can’t eat. I’m thinking this is the sad portion of my story yet the devil on my shoulder tells me it’s never ending.

My intentions are not to give up but the realities of my situation seem to be closing in and I do not want my son to see me so weak and tethered to the bed. I see Hank, my doctor, on Wednesday to discuss new options. Thankfully, the big brains are back in my corner as soon as they heard the ‘a-fortune-for’ drug is only working in some areas. There is hope, life isn’t perfect and things take time. I am grateful for all measures that are taken to sustain me, yet I want to live fully. I want to be able to walk the block to Healeo http://www.healeo.com/default.asp for my juices, have some energy to celebrate my husbands upcoming birthday, take better photos. I feel as if every time I write or speak of my hope it gets kicked to the curb. Shortly after I wrote, Such is Life, https://keepthecalm.wordpress.com/2012/11/08/such-is-life/ my life started to become more difficult to live. This is what makes me sad. With all of this calm fighting and staying the course, have I used up all of my energy? Slow and steady wins the race, and yet at a snail’s pace I barely make it around each corner these days. I won’t let my life come to this, I’m going to cross that finish line one way or another and make it to an age that my son will remember me, and remember me happy. We can create a full life, make it through unremarkable troubles, heartaches, and pain, and yet still have learned and enjoyed each passage. The sad passages give me the courage to move through the painful ones, and embrace the beautiful times. Gratitude always, I try.

At one point during this cancer battle, someone said to me that it is not uncommon for cancer patients to feel entitled. I balked and was angry at this statement and message. I don’t believe I have had an entitled day in my life. Have I said “I don’t deserve this”, why yes, but does this make me entitled? I’ve worked hard to be a loyal, honest and graceful woman. So, no, I don’t believe those of us going through cancer are, or feel entitled. We get to use the cancer card for sure, much like a handicap pass, or like the pregnant or old lady on the subway…I should get a seat before a healthy young person tweeting their complaints for the day. What I do seem to take issue with as a cancer patient are the people on the outside who have zero presence of the journey I am taking, those who are not mindful and undermine my decisions. The people that bitch every day on FB or Twitter about traffic or the weather, as if cold rain or snow in winter should be surprising, or the traffic on the LIE in NY at rush hour is a shocker. These things annoy the heck out of me. Should I waste my energy thinking of it, no, but it brings out the anger of which I must feel for my diagnosis. I have a new appreciation for the action of complaining. I have new advice to those experiencing cancer as a bystander to a loved one. Shut the fuck up. If you are not a close friend, don’t bitch to me about anything, at all. I have unbearable pain to shoulder and just enough energy to pretend I feel okay to my kid. I’m over listening to you people talking about your boss, the cold snap, or election results. Accept what is in front of you and take it like a man/woman. We all have a sad passage hiding within our stories, must we simplify them with the baseness of social media venting?Teaching courage and gratitude might be a better outlet. I request you fight for it, feel it and let go of the mundane blues. Perhaps this is me feeling entitled that some of you should change because of my journey. I am not sure, but with gratitude I try…can you?

Maybe I’ll write a country music song

When Things Stop Working

The hand of an almost stranger touched my heart
He knows when to ask, so the tears well and start.

There is a short gaze, I turn away,
To spare another the pain that breaks me each day.

I wallow in my cup, he cradles my hand
So many hold me, so it’s not hard to stand.

I carry it alone but am held up so high,
so only brief tears with no room for the sighs.

The hands of a friend just touched my heart, with the hands of a friend, I won’t fall apart.

A brief update:
Said friend asked with a smile how the start of my New Year was going. Tears erupt. I had just come from the doctor and learned that I had a new good size tumor in the Sternum. While the drug is working everywhere else, this new tumor arrived. Merry fucking Christmas. The doctors continue to be shocked on the oddity of this cancer. So, we will rid this with radiation to lesson the astounding pain it causes, and add a chem to the Afinitor. I advised my doctor the reason this happened was due to stress. I know it, feel it. I bend to the wishes of an old lifestyle and others. It is time to accept my life needs to be CALM. I can no longer accept anger, grief or stress near me, AT ALL. So, no, not the start of the New Year I was hoping for but maybe we will get the shit storm out the way earlier. BTW: Thank you all for your always, sweet comments!

Friendship and hardships

There seems to be an unwavering sense of solidarity within the cancer community, and most especially within the breast cancer community. I went through a minute of thinking because my cancer is now primarily Neuroendocrine cancer, I might not be able to speak of my ills and triumphs with as close of a connection to the women that I have befriended. Yes, stupid, I know, but all sorts of things muddle the mind when undergoing such trauma, pain, and emotional changes. We are all one, as maybe Bono might say in relation to global wellness. We are though. It isn’t as trite or over commercialized as maybe it sounds. The reality is that I was able to meet a friend whom I hadn’t met face to face before, without any awkwardness but with a clear sense of one another and our experiences. We met here within the blogging world of cancer. We had a lovely connection online and symmetry to some of the hardships. When I read she would be in Seattle it felt natural to try to connect. Such a lovely but short lunch and time together. I felt more like we should curl up with some tea by a fire and talk for hours than be in a loud restaurant. Honesty and clarity are something I crave within friendships right now while I attempt to heal; I am grateful for both my old dear friends and the new ones that can grasp this insane ride.

This time of year I always want to count my blessings, and all of you whom I haven’t ‘met’ are among them. It is through hardships that we can recognize the most beautiful friendships. So, thank you.