Home, thoughts and requests

An update is due as I am home, and the words have wanted to flow, I simply haven’t wanted to stop for a minute though to write. Too much needed my attention. My son, my love, my life, my home, me. I am home. Though, Los Angeles treats me well, and I truly, truly enjoyed my time there, but now, I am home. Home to the house on the lake where I can cuddle up with my boys and not mind the rainy days. Hobble down 42 steps to our sanctuary and be okay with not wanting to leave. The hardest part of being home, and please don’t take this the wrong way, are the questions and calls from people checking in and wanting this information. My first week home, I just wanted to see my son and husband. I’m not sure why that was difficult for some to grasp, in all honesty, the contact from those who aren’t apart of my everyday life, seemed a trespass. Something I am working on….letting people care and it be okay. It is odd and difficult having people around always. Always! So, there are those of you who are incredibly thoughtful of my process, who connect remotely, with a simple text and let me be if I don’t answer, and I thank you. Now that I am settled in with a bit of space between LA and home, I can come up for air, enjoy my visitors, friends and family who rally around to help and offer some sort of update, though I don’t have much to tell. In all honesty, it is a challenge being home. Life in LA was easy, restful, and healing. Having the time to myself was needed. Being home, it is apparent how hard things can be; I am immobile and I am responsible for a little one. My pain in the right hip has gotten worse and my walk has altered. I am unable to drive myself around, so now we need two sets of hands, help with Milo and help with carting me to the numerous appointments that maintain and shape my life. This means that there are always people around, and this has been the most difficult part of the cancer process: navigating the waters of schedule, people and their needs, and keeping Milo tuned into his parents, rather than his caregivers.

The request, Stop Asking Questions, please.
I love everyone, and wouldn’t want to go this alone, couldn’t, I am so blessed with my champions who assist me. This is not what is difficult about home. It is the questions. I’m not sure why the answers are needed while I have none, or when I have this blog….can you not read what it is I want to tell? Here you go… This is all I have. This is the update. I have cancer, I don’t know when it’s going away. I have a lot of pain right now. The new routine is that I go to LA to get help with a new set of drugs, a new set of eyes and ears and I feel like things are working. I feel great about this new treatment, but that’s all I know, it will have to be enough because right now, I want to spend time with my son, and help him understand why my boo-boo has not gone bye-bye though I am home from said healing. My energy is taxed, I can barely walk, let alone explain away the intricacies of metastasized rare cancers and study drugs. I truly appreciate the love and the want to ensure I am on the road to recovery, but again I only know what I share, the daily ‘how are you’s?’ seem to serve as a reminder that I am in pain. I know you don’t know this, so I am sharing this now. While I am on the subject and using this as informative posting, the hours between 5pm and 7pm are for Milo’s dinner, play and bedtime, time as a family. It seems everyone wants to catch up then. It must be on one’s way home from work time or something, but you all call and text at the exact same time. (Otherwise, I wouldn’t bother expressing, but the phone goes crazy with the beeping, and I keep it on for doctors and such). I am occupied and move at a snails pace as written, as earlier posts state, so I am off line and off of the phone. I love you all and will be truly updating soon. Scans are Monday (Wish us luck this drug is working!). Update at the end of the week. I will be in LA for appointments and the drug pick up, I will be home in a few days, so there isn’t a need for checking in before I leave or return. Many thanks…

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Cheri Pearl Photography http://www.cheripearl.com/blog/

Heroes

I am not the heroine of this story, there are many, he is my hero today, everyday. They both are, my two loves, Milo and Karl. I learned this ever more presently this past weekend, during a storied visit. Though very much under the weather and not the ideal situation for our reunion, we embraced every minute we had with such an abundance of love, it is and was astounding.

The arrival day, of course, couldn’t get here with enough swiftness. I had had a five hour appointment at the clinic for this chemotherapy drug study. And as they flew to see Mamma, I had my port accessed, blood drawn three times, EKG’s, two skin biopsies, coupled with doctor and nurse visits throughout a full day. As they flew, I was at work healing with a giant, excited smile all day long, of which I am sure my partners in chemo jail crime must have thought was insane. We, my inmates and I, spoke of my son, of hers, of screenplays (because it’s LA), and side effects while they traveled, while he slept in his arms and peered out of the window into the sky searching for Mamma.

They were headed straight for me from the airport, it was quiet, at the end of the day and I was on my last nurse visit when they arrived. I heard from Chanel, one of the nurses, is that your baby looking for you!? I could feel my smile get brighter and hear the coos from the clinic. It was unbearable that I couldn’t run to him, my gait is at a snail’s pace with intense pain, yet my heart leapt immediately to him, as I watched him peer around the nurses station looking for Mamma. Each nurse seemed to be lined up watching us, patients still in their chairs, listening, my sister’s friend, who had been beside me the entire day, and my husband, all of them watching with tears streaming at this little one who just wants his mamma to scoop him up. I hurried to my chair as Karl lifted him to my lap, and immediately he pulls at my shirt where the port lives with bandage and said to me, Mamma’s boo-boo go bye-bye, over and over he excitedly speaks, grabbing at my booby, at my wound, just knowing I am here for this, for healing. Hugging me, gentle as a lamb, and excited as toddler can be, he loved me so deeply in that moment and always. I am such a proud mother and in awe of my husband that guided him to me. We couldn’t get out of there fast enough to just be together. In two year old cuteness, he was running around the place saying hello and exploring as we gathered ourselves and headed to dinner and then slumber at dear Kosta’s home, where I am living at the moment. A dear, dearest soul, a dear old friend of my husband’s, we head towards such a home. Milo sleeps so easily in this new place and it comforts my heart.

Our entire time together we loved like this moment, with pain, tiredness and simple colds aside, we played in a magical bed of laughter, family, warmth, and gentle calmness. When they had to leave, I didn’t cry as expected. I was elated by the time together. Renewed by the love of a husband who has grown into the most present father, loving man and soul a woman could want by her side. I am beyond blessed by such a hero. I sat in the car saying goodbye, as Milo said to me, Mamma stays, boo-boo get better. With Kosta, boo-boo gets better. With this, I know that I am supposed to be here, though away from my loves, I have two precious heroes who support and guide this trail.

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The rain of pain in LA (for just an hour)

4am, is it the rain in Los Angeles, pouring onto the stone patio outside of my window, which wakes me this hour, or is it the pain. This is a new ritual. The 4am snack and oxycodone alarm clock, though today I believe it was the soft rain, I woke up smiling as if I were home. I ate my savory cookie, took my pill and rather than dream sweet, I decide to lay awake and listen to the brief interludes that remind me of home. There is much reflection this week, here essentially by myself. Gorgeous friends helping when I need, but I am completely responsible for my own schedule, which is nice, but in all honesty, a bit wrapped up with fears. My independence, of which I wear so proudly, is a question with each step I take, each one that is a supreme ache. I’m slower than the 90 year old man walking with his cane next to me. It is interesting how this first week on my own, I feel the most physically weak and unable to do things without intense caution. There can be no. falling. down. This is a big deal for a young woman. This is the weakness I wanted to stave away. No walker, no wheelchair….not yet, please. I’m not ready to do that….but when will I be? This is the time when I say never. This, I am not accepting. Sorry cancer, you can’t take this, I want to bounce back and walk with ease. I’ll take the stylish vintage cane at a snails pace, that I can do…

Will these bones heal? As I have been awaiting four days now for a return phone call from the doctor, the big wonderments are starting to creep in, so when the drug really stabilizes things soon (with hopeful gasp) will my bones have time to heal? Can I gain some ground or did we lose too much in the waiting game of drug trials? This part of being on my ‘own’ here I hate….I hate not having the comfort zone of my doctor, my, beautiful nurses. They are an extension of my family that make it easier to heal. Here, not so much. The scattered way the office moves is frightening. My UCLA doctor will get an ear full tomorrow. Calling for four days over new pain without response should be unacceptable and certainly inhibits the positive state that I am working hard at maintaining. I’m bathed in my own light, and that of friends, I know this but there is a security blanket at work for me under the umbrella of a great oncology team. For me, I need to have that balance, the best of western medicine with my personal foundations in spiritual, thought and eastern styles. The balance can be easily tipped, especially without my weekly acupuncture and Healeo juice routine, but I make up for this with quiet meditation, breathing or just cleansing thoughts. I do not have control of the drug trail system yet. Yes, I said trail…I keep misspelling drug trial for trail and come to think that maybe that is a better way to look at things. It’s a trail that I am slowly wandering on, breathing in what comes my way….not trying it out, walking the path, I just wish those leading the walk would get a better receptionist.

The rain has subsided, back to bed…

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 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?