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.

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.

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?

Shielding realities

There are so many pains to be had with cancer, whether you have it, or feel it within loved ones around you. We wear the illness with either grace or heartache or both and it may be obvious to some how we feel. Though, I wonder as a I carry this cancer, how much do I really share, especially on days like today. Also, why do we feel we must mask our sorrow and doubts, pains and suffering? Should we spare the ones we love or prepare them?

It takes me time to post because I am tired, and I usually do not like to hold back, maybe with the intimacy of my family I maintain a somewhat private front, but I try to be real, and funny, and brazen, and sad and frustrated when it hits me. I am fading in the wings right now and frightened to let everyone know. If I write it or say it out loud, will my courageous roar fade to a whisper?

At some point our reality becomes shielded and those around me hardly see the fear. Tonight, an 8:30 pm unexpected doctors call brings concern. A foreboding tone in his sweet voice, I breathed to the pain and told him that I will do my duty and be at chemo jail tomorrow. I shadowed my tears in the fatigue and sadness for having to miss yet another acupuncture appointment but really my insides were shaking at the idea that I must go to chemo tomorrow for emergency fluids and Zometa because my calcium numbers rose to a new high and my body aches all over. After a year of fighting, why now, does my young skeleton want to break apart from me. We are whole and meant to be together….I don’t feel if I should be breaking down just yet. Miles to go, miles to go before I sleep.

So, why must I cry alone and lie to my mother about my appointments. She doesn’t read this at my request. I still ponder, why the masks, when we wear our cancer upon our head wrapped in turbans, scarves, henna, wigs, and anything that will help make them forget. Perhaps it is my continued request for positivity to surround my world. I can have tears but it is beyond difficult for me to shoulder theirs. I must remind myself the choices I make are focused on healing…hopefully it is the correct decision. I hurt, I’m tired, and scared but I am not letting this define me right now, pushing past miles, praying for decades as always.

Thank you again for the continued luv and support……
This post was inspired by not only my experience, but the thoughts of a fellow cancer mate as well.

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…..

Oh the irony….

I’ve written that this is the year mark of the return of the dreaded “c” yet boasted about how I was feeling better, filled with hope, keeping things moving towards goals. Yet, from one week to the next, I went from going to soccer matches and watching fireworks to feeling gutted. 103.2 fevers, pains so unbearable, and sorrow, just sorrow tearing down my face. I feel as I did one year ago when I was admitted to the hospital. What the heck fire happened from one week to the next?! Scans showed no signs of infections, allergies, virus’ and showed the liver tumors had shrunk a bit on Navy Beans. And then more tests….the next day, the bone scans showed growth in the tumors in the spine and the ribs. I do not understand cancer at all. I’m positive, feel boosted by the smiles of my little one, prayerful, meditate, sort of eat better, etc etc., I’m fighting a good fight and was supposed to be on the right track. I’m pissed. I’m pissed that I am in so much pain I can’t even carry a purse or put a cute outfit on. I need to send friends on the hunt for decent maxi dresses that don’t irritate the pain ridden areas. You know its bad when wearing clothing hurts. How did the change of week do this?

My energy is fading so I will keep this update short. I have a Monday doc appointment in which I assume we begin a new treatment. If Navy Beans is helping the liver….should we stick with it and add on a better bone drug? Is it time to go back to NY and see the MSK doctor again?

Thankfully my close friend is here to help with my son, who has been so sweet. At 18 months old, he just walks up to me and gives me hugs every now and again. I love being his mother and need to see his life unfold.

Keep you all posted…..thanks in advance for the luvin’ I might not have the energy to reply to comments, but feel your strength already.

These are the hugs that keep a mamma fighting…