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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“I will continue to heal and move this cancer into remission, swiftly”

It is so difficult being in the hospital for ten solid days without some kind of sadness or negativity seeping into my brain and heart. It’s as if it comes with the fluids and nutrients. I am home now, thank the gods and goddesses. I’m not ready to let go and while I was there, it was if the devil was on my shoulder pushing me to get things ready. Fuck that, I say! Fuck you, you piece of shit cancer demon. (Excuse the words, but it’s like breaking plates…. Sometimes you just need to say it out loud, or complete the action.)

I’m out. I survived the complete thrashing my body took, with its sad & lonely white blood cell. Feeling better, though I need to rest because the cancer grew, spread a little too (a few blips on the lung now), and continue to regain a normal diet, and get my cancer fighting routine back. I’m angry though, that the Kool Aid kicked me while I was down and didn’t even work. I told them there was something funky with the Kool Aid!

So at this point, what do I say, think and feel? I don’t want to be so angry, I’m trying to maintain an inner peace because I truly feel the stress advances things, makes me sicker. The outlook isn’t so positive but hey, I’m gonna beat the odds, right? So, the treatments have simply just sustained me, not shrunk these buggers…okay but I’m beginning a new ‘beyond state of the art’ cancer treatment that I am so profoundly blessed to gain access. I’ll explain more when I know more. We have some badass thinkers on our side and I have confidence this will be the shift. My brain and body are tired, tired of processing and carrying the weight of this cancer on my sore shoulders. My spirit has been reinforced by the healing soup, hugs, love and support of those around me. My Champions continue to astound. The questions, at times, are unbearable but I know they come with love. I’ve decided to share this blog with more friends and family to release the pressure of updates and it is time the truth came out. I’m sick, it sucks, we will get through when time tells us so. I still meditate that we will move this cancer into a remission ‘swiftly’ and that I have decades…

I know I must have time, as before Milo was born, I had a dream of myself and my five year old son we were having the most precious lunch time together. It was so clear, I know this day will come, here on this earth. These thoughts, and moments keep me headed to the finish line that is remission.

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Cheri Pearl Photography

Checked in…

In the days past, I have feared the days to come of having to really live a cancer lifestyle. I did not want to bring the outside of cancer into my home. I liked keeping it neatly tucked away at my Monday chemo jail sessions for only me and my visitors to observe. I actually see chemo jail as my safe place, a route to healing, time to rest alone, time to be ill without tears of those around me watching. I need it to stay there, so my weakness this past Monday had me denied chemo jail, but checked into hospital.

The mouth sores are so unbearable that it is difficult to even drink water or to talk as my teeth hit the sides of my tongue where the sores lay tortuous, where side effects of drugs can lay down the ground work for defeat. My cure cannot be my defeat, no, yet it is, it is an ironic plot twist. Really, mouth sores? This is what will create doubt in a mind willing to forgive this painful life I must continue to lead, in a mind that can withstand the great depths of misery in hopes that longevity will lead the way. Doubt and fear are ugly demons to carry on such a battlefield. I am supposed to walk through the fight with peace, my healer stresses this but at these times it is difficult to hold back. I want to take an ice pick to my cancer, not meditate on gratitude today, because now my cancer has to enter the home. My protected sanctuary will be violated by ‘in home infusions’. I need nutrients to fight and have none. Nothing can pass through the mouth, nothing. I am silenced.

So, here I write and here I sit, sequestered with one white cell holding onto me as if we are alone caught in a storm, blown by the waves of this toxic disease. I shall build back my blood and bones, claw through the terrain and find my body again. I have so much to look forward to, so many new adventures on the horizon with a little boy and a beautiful family, all extending their reach to pull me up from the waves. Phew. Another pep talk. Another fight song of future plans and promises. I can’t wait to meet our friends baby, see an old childhood friend again, go to Italy, back to NY, decorate for Christmas with ease, revel in a beautiful Thanksgiving tradition….to name but a few desires. A new mantra must be made as clearly I can’t handle the Kool Aid. We WILL find a drug to fight this and fast, we will….my glorious doc must have more up his sleeve than old school Kool Aid. Right?

Today, low white counts, hellfire mouth sores and going on one week in this hospital jail. By Monday, I am Kung Fu-ing my way out of this prison…and hopefully I won’t have to take this show on the road into the homestead. I am certainly not ready for that kind of cancer invasion.

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Photo by Cheri Pearl Photography. Cheri’s Blog

Cancer in the time of Love

seasons of love….

There is definitely a plague-like feeling to cancer in this time, affecting generations of years past and present. No, it is not contagious, yet it is as incurable as the plague, cholera, and consumption had been in their time. It interrupts and is spreading at a rate that is concerning to me yet unnoticeable to those unaffected, perhaps because it is not contagious, yet isn’t it? It is hiding within the air we breathe, the lotions we use, the lipstick we wear, perfume, the food many of us eat, and possibly the water in some areas. I am not fully versed on an intellectual level of the phases of carcinoma causes, I know now we all have cancer in our body waiting, waiting to writhe into a mass and sicken the body and heart of it’s bearer. Cancer in the time of love wilts the flowers of growing families and seals our fate for awhile….
Some get out unscathed or slightly interrupted by it’s profanity and others must endure a lengthy bout, and the unlucky, some must just accept the shortness of time as a bead of water fades on a rose.

Is the pain worth enduring, lasting extra years for a love which can turn into frustrations amidst the battle rising in a mine field of lesions? Everlasting true love becomes tested, children get tethered and relatives and friends ride the wake of shark infested waters trying to feed their loved ones soul, something rejuvenating. When there is no giving up, what does one do with these thoughts of bowing out of heroism. Did the courage die in the drought of undrinkable water? Will I awaken to disappearing masses when my brain clears and my nose can smell a rose? Have I yet to kill the tiger in this conversation of fading faiths…
I hope so. The time of cholera has past, so this time of cancer must fade eventually and I will find my love again. When my sweet boy will continue to bring me lavender to smell, it will resonate and I will teach him the tests true love and friendship can withstand within a variety of battles. We will bask in the thickness of a wooded forest, a plentiful harvest and lush waters when the droughts fade…..

Chief and my 2012 self: words of explanation

I was inspired by all of the recent blogging challenge posts or perhaps, posts of solidarity, especially from Renn at The Big C and Me, she had a great request. So I thought I would try my hand at this form of inspiration. You onboard?

Here is one for my lovely readers (the few that are out there;) post a photo or self portrait or other form of visual art (if you are not comfortable sharing your visage with us) of yourself that describes who you have been within the last six months.

It was Carol’s self portrait post that prompted me to add a recent photo of myself taken by my girlfriend Cheri Pearl. It isn’t a self portrait though maybe a bit of a collaboration. Cheri has helped me document some of this bullshit cancer process, and I am drawn to the idea of the back of my head as a reflection of who I have been during the past six months of my cancer process. I had been distant, pain filled (I think you can see how my neck is a bit wonky), sorrowful, and not wanting to face life as head on as I would have normally. Yet I look towards Chief (our bison skull) with hope and faith that there is someone keeping watch over me, us. I’ve sprung back to life within the last month or so, maybe I’ll have to add another photo soon of this forward movement stage.