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.

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Reading, writing, and my life on drugs

My focus is stunted, and I am unsure if it is the chemo brain, parenting a two and some year old/or dealing with all of the planning that it takes to travel to LA monthly. Who knew healing would be just like being a personal assistant. Scheduling is half of my life, the other half is resting and recording my drug intakes. I’m not complaining, I’m merely explaining where the heck I’ve been. I miss writing and reading all of what you have to say, and on top of all of this my hard drive failed, there is a large possibility that I’ve lost a lot of writing, a lot of Milo’s baby photos and am working off of a slow iPad that has reached capacity. I’m in denial, so I was hiding. So there you have it….that is where I have been.

Here is my latest update for my scans from treatment on the UCLA study drug LY2835219:

So, recently I had the latest scans to determine if this course will be the correct way to continue. The scoop is that I am a ‘mixed bag’, so says both my doctors. Of course I do things the odd way, which means the study drug is working but it’s also a bit confusing. The soft tissue looks really good, both doctors (Seattle and LA) are very happy with this progress. In such a short time there is shrinkage already in the liver, stability and definite success with taking this study drug. The bones are the confusing part. There is some growth and honestly, many new fractures, but it is unclear if this growth is prior to the drug kicking in, and that perhaps the response is just slower in the bones. So, we decided to up the dosage as I am handling this treatment quite well (not as many side effects) and get some radiation done on the bad bone areas. This plan is a middle of the road approach, conservatively, we would change things but both doctors feel the promise is significant enough with the soft tissue that being a bit risky will be worth it and radiation will help the bones.

I am not sure if i mentioned that I have been physically out of commission, really. I can’t drive and my mobility is quite limited, so the hope is that this radiation in the problem areas will help fix that (my hip) and give this treatment more time to work in the bones. Hopefully the radiation won’t effect the way the study drug is working, the protocol seems to say that it should be fine, so prayers directed towards this success are welcome! Dr. Kaplan (my Seattle doctor) will monitor my progress before I return to the LA study team in mid-May. If all continues to go well, I will return to LA once a month for a doctor visit, tests, and drug retrieval. I’m gonna call it my LA drug run. It’s the truth, I can’t get it up here and it’s kind of funny to have to fly to California for drugs. It’s a movie in and of itself, especially as I have people driving me around too. This could be a reality show. Back and forth to LA from Seattle, a 38 year old mom heads to Santa Monica for her pills and can’t even drive herself! I wish I was in some kind of a limo, that would really look great. It was funny when my girlfriend was moving me back to Seattle after my long LA stint, and we had this bright red, crappy rental car, lost in LA and trying to go shopping while I was high on Dilaudid for the pain. Just call me Drugstore Cowgirl Part II. I bought a cute dress that day though, so did she… I think the stress of my pain was killing us both, and creating a scene. She documented it all quite well in photos though.

Now I am home, I return in two weeks, my birthday is next week and I’m not ready for it all. Yet, I am moving in extreme slow motion and it has nothing to do with my physical limitations. I am just slowly trying to wrap my brain around this lifestyle that I am leading. So much so, that it is difficult to articulate how I feel about this new process. I must say, I enjoyed hiding in LA by myself for awhile. I feel guilty as a wife and mother saying this, but I needed to be away, to hide and to be me, and I’m still not feeling ready to be apart of my Seattle world but I’m here. I am being radiated and drugged while people celebrate the Kentucky Derby, May Day, Cinco de Mayo, Greek Easter and my birthday and Mother’s Day, I remain in a haze with focus that is stunted…I’m looking for clarity, but it’s a bit difficult through the goggles of Oxycodone and a God knows what chemo cocktail, when really all I want is a glass of Rosé on this sunshiny day. Well, the drugs are working, hopefully, so I will not bitch anymore, I just need to find myself within this new phase. Each switch of the treatment seems to bring with it a whole new set of skills to assist in the adaptation of my life.

Pain Day…

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

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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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.