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/

The Smile Box

I’m not sure why I still am surprised at the capacity of how amazingly supportive everyone can be, but I am, and it needs telling, over and over. The way in which the production of love jumps to my side, in all walks and shapes and ages, is astonishing.

The Smile Box came in a package from a coworker of my husbands. Her and her most lovely daughter filled a beautiful glass box for me with true and creative little “smiles” in the form of mostly shrinky dinks (which is the absolute best thing in the world!) and little tokens of love. Accompanied by small metal hearts, a pretty rock, a seashell, a fortune, was a big old handful of small shrinky dinks emblazoned with words of love, Milo’s name, flowers, coffee cups, and even a tiny bottle of wine! The list of little treasures goes on and the best part of this incredible gift of smiles is that it made for a most precious game for Milo and I when he visited. We carefully unwrapped the gift together, explaining that our friends made this to help me feel better. What a playful time he and I had, looking at each piece as he decided that because this is for my boo-boo, they all needed to go in my boo-boo. He looked at each treasure and placed them on top of my chest where the port lives (Milo thinks this is the boo-boo site) and kept putting the little pieces down my shirt. A first it was a struggle to fight back the tears at how sweet and scary and sad this felt but once we powered through watching such an excited display, it was the most amazing game ever! The Smile Box was both literally and figuratively packed with stunning love, and of course, smiles 🙂

The Smile Box is now a term I think I will use for these magical gifts, encounters, and support that I find along this course I am on. I’m usually not this sort of cutie with my words but smiles are abound, so I’ll take the cue and add it to my list of idioms.

So yesterday afternoon, at the spurring of my dear friend, we wandered around the Los Angeles County Museum of Art, he guided me in a wheelchair, a big step for me, and I had the most amazing afternoon. It was, indeed, a smile box full. In more ways than one, the day was simply bright. I gazed upon incredible art, of which it has been two years since I have stepped into a museum (too long for me) while having a day with a most amazing friend whom I rarely get to see. We laughed and cried and discussed life, art, love and the fears of mathematical equations. At the end of my road, he got the car while I slowly hobbled from wheelchair to a faraway curb when another smile box emerged. Sedrick and Miss Lady. Miss Lady was a beautiful dog of which I complimented, she nuzzled my leg and her owner, Sedrick, a tall gentle, young man told me that I was going to be okay. He knew it. His mother had cancer, he had asked if my leg was okay as I had my cane and extremely slow gait, but he knew I had cancer. He didn’t want to pry but he expressed that I reminded him of his mother, my poise and my spirit alighted something within him that he wanted to share. He was gentle with his words, yet confident that something needed telling. He knew that I was going to get through this, he expressed assuredly. He said that I was in the right place, that she (his mother) beat hers swiftly and though mine may be different, he just knew. I said, you know, I think you are right. I told him how I, of course, missed my family, but I know this is where I am supposed to be and thanked him for sharing in my beliefs and that this positive way of thinking is the only way. He kept on telling me about his mother, his sadness on being far from her, his emotions surrounding her illness. He was an angel that wanted to share his love with me and embraced me with his words. And well, it just so happened he was from New York too! A dark, lovely angel from Harlem opened his heart to me on the sidewalk of LACMA. He walked me the whole way to the curb, to my friend and in these moments I wonder how we can part from such people. I won’t see this man again and part of me is saddened by that, but I know that is the way life is supposed to be, we have encounters, smiles, and he will go home and call his mother and I will carry that moment forever in my heart. All for the spurring of learning to use a tool when I need one, loving my day with my dear friend, and meeting Sedrick and Miss Lady; I opened a very big Smile Box.

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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 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