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…

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?

Maybe I’ll write a country music song

When Things Stop Working

The hand of an almost stranger touched my heart
He knows when to ask, so the tears well and start.

There is a short gaze, I turn away,
To spare another the pain that breaks me each day.

I wallow in my cup, he cradles my hand
So many hold me, so it’s not hard to stand.

I carry it alone but am held up so high,
so only brief tears with no room for the sighs.

The hands of a friend just touched my heart, with the hands of a friend, I won’t fall apart.

A brief update:
Said friend asked with a smile how the start of my New Year was going. Tears erupt. I had just come from the doctor and learned that I had a new good size tumor in the Sternum. While the drug is working everywhere else, this new tumor arrived. Merry fucking Christmas. The doctors continue to be shocked on the oddity of this cancer. So, we will rid this with radiation to lesson the astounding pain it causes, and add a chem to the Afinitor. I advised my doctor the reason this happened was due to stress. I know it, feel it. I bend to the wishes of an old lifestyle and others. It is time to accept my life needs to be CALM. I can no longer accept anger, grief or stress near me, AT ALL. So, no, not the start of the New Year I was hoping for but maybe we will get the shit storm out the way earlier. BTW: Thank you all for your always, sweet comments!

42 steps and then some

Few and far between the writing occurs, yet it lies within my heart and I speak it with each night. Forty steps and then some, to my house. My next challenge has become chess moves in an endless game. How many steps to take before I live again, before I leave this earth? Tomorrow it will be forty two steps and then some, carefully maneuvered down to my home, my sanctuary in the trees. With cracked hip, I will descend and ascend so I can keep my spirits in tact, and not feel as displaced physically as I can be emotionally.

Within this past week, we heard an array of news. CAT scans, bone scans, an MRI and some fluids, I am mending and breaking at the same time. The A-fortune-for drug is working! It has stabilized the cancer, the bones, and shown even some healing signs in the liver, and disappearance of those new spots that appeared in the lungs in early September. Though a long way from the finish line, it appears we are gaining back ground. However, the bones did not escape damage. I have a crack in the hip that has me immobilized until we can repair it, hopefully soon and with minimal surgery. I have fractures in the spine that unnerve me and it is true that we have forty two steps down to the entry of our house, with further steps up to my son’s bedroom. Obstacles, setbacks, and yet steps that go down, also seem to go up.

My body is aged and perhaps I will not ride a horse through the hills of Spain again, but I will see the New Year emerge with brighter tomorrows with the help of a little oblong pill that I sing to, four days a week. It’s my edge in the chess game. My voice will encourage the A-fortune-for to mend, even as my will was questioned, as I digested the news of my cracked out hip with a gulp of singeing words like “we can’t catch a break”, I bowed to the setback and summoned a chord of some bad 70’s music and remembrance of a walk in the moonlight, singing with friends just days before this news. One step ahead, one song for the soul, one step down to the house and one step up towards my sweet son’s bedroom. Forty two steps and then some towards the road to healing.

Such is Life

“when the living was easy”

Today, driving towards chemo jail, I saw Life. I saw movement in the world, in such a clear way. Though my head was cloudy with sniffles and chemo brain, today I can feel. Smell the smell of the fallen leaves touch the earth, see the brightness of the trees glisten in an Autumn sun.

Today, I drove by a guy standing on the street corner slowly waving his sign for cheap oil changes looking tired and strained, well before the clock struck noon; I wonder what he was thinking. Today, I parked the car and walked towards my favorite pre-chemo juice spot, Healeo, past a yoga studio and across from the first fully sustainable structure that will be completed here in Seattle. How cliche, how real, how of this era, how great that I get to see progress. I notice it deeply, as if I were a scene in a film. I wonder why pretty music is always sad in someway, and why I hide behind tv shows that feature physically strong women with broken hearts. I notice these things today. It seems calm around me and I decide that I am not only going to just observe life or will use a crutch to try to live. I’m still sick, my bones hurt and such, but today I can see and I will try to live. I get sick after I try to live. I have a cold after a weekend visiting with friends and family. I am sure I will be exhausted by the upcoming Thanksgiving celebration, but sometimes that feeling is worth the time spent living. The moment may pass of my feeling this way, but for now I will acknowledge and try, try to crest the mountains, to live.

Tomorrow, I want to spend the morning with my son without help, without falling down. I might even take him to lunch alone, and the next day I might even read a book. The day after that, I have a photo album and art project to finish, the following day I will write, and then I will have chemo jail and listen to beautiful music that is both sad but warms the heart, and I will then plan a weekend away, and then prepare for Thanksgiving. I will enjoy the spoils of an abundant farm in gratitude and look forward to living with each breath I take, in either bursts or quiet slow movements. I will not let this disease paralyze me while I breathe the fresh air in the shadows of a mountain.

“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.

Cheri Pearl Photography

One Lovely Blog Award……….

Okay, so I am not going to let being tired stop me from this lovely aknowledgement, oh and BTW: my MRI on Friday came back as stable…good news since we were all thinking the cancer was growing. Anyhow, back to fun stuff…

There is an award passed between bloggers, and It seems like a nice pick me up! It’s called the One Lovely Blog award, and you get it by being recognized by fellow writers.

I received this eAward from Kendra, of Really? Cancer? I Think I Need a New Purse’s blog: http://cancerpurse.wordpress.com/. What a beautiful and uplifting surprise. She is amazing, have you seen her blog? As a recipient of the One Lovely Blog award, I guess I must follow these steps, just from what Kendra’s note said…I haven’t had a chance to look this up yet:

~Write a post linking back to the person that nominated me

~Tell seven things about myself

~Pass this award onto other lovely blogs by linking their sites to this blog and notifying them

Here are my seven things:

1. hmmmmm. I am an Italian New Yorker living in the Great Northwest…haven’t looked back in 15 years except to miss my friends and family. Love the city but the calmness here suits me better.
2. Adore the movie The Outsiders to this day.
3. I am, of course, a mother to the sweetest soul I know.
4. If I wasn’t so dang sick from this cancer bug I would be truly happy with where things have led me, still am…but annoyed by the cancer phase.
5. I love taking pictures and writing and feeling as if I can share some thoughts that might be relevant to another.
6. I love looking at photography and art and could stare at the winged victory in the louve for 24 hours.
7. my friend’s farms are among my favorite places to simply be, surrounded by great friends, a loving example of harvesting truly, and an abundant table full of laughter….oh and good wine, when i could handle it!

hmm, well i have certainly come across many a lovely blog. more to say about all of these people and everyone here, but a few words….

• Bill, of http://bwthoughts.wordpress.com/ simply writes about his thoughts on many a subject and has given me clarity when things seem fuzzy. I was happy to stumble upon his thoughts so early, his passion for his family and storytelling.
• Jen, at http://jenmeusjourney.wordpress.com/ and I seem to be on a similiar cancer journey and have been able to relate a lot too the harried proces of MetsBC. Sucky way to relate but I have found her blog to be such a help, lots of great opinions and heartfelt writing.
• Lynnea, at http://burningbrightly.org/ has an amazing soul. We have bonded on our BC journey and her northwest origins as well. Her generous spirit is so hopeful and contagious. I want to fly through the computer and give her hugs for completing her chemo treatment.
• AnneMarie, at http://chemo-brain.blogspot.com/ is a rockstar….enough said 😉

Being that I must choose a winner….don’t want to because you all rock my world…I’ll pass the hat to Lynnea. Being so far from family, living in Europe must have been such a challenge. She has been carried grace by her side with each post.

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…..

Another day in the life of the moving cancer cell

Oh for the love of God and Goddesses everywhere….

I really don’t want this post to be snarky, why me or deeply sorrowful but I’m feeling a bit of all three among a thousand other emotions. The shit has hit the cancer fan. I’m just going to lay out the update in a list form and then move on to my real writing. I want to take a moment to acknowledge with great gratitude all of you who read and support and have showered me with love…..

Here goes:
Cancer has spread in the bones, and the existing tumors in bones have grown (sucky and painful).
It shrunk in the liver (okay, that is good).
My long term prognosis of shooting for “decades” is no longer realistic (I call bullshit).
Worst case scenario is really bad (not telling, as it’s not gonna happen).
I begin my new treatment of AC (my Adriatic C) on Monday.
I started Cytoxin (cy-youngin’) on Tuesday.
Sent all of my info to Dr. Larry Norton at Sloan-Kettering.
Sending my info off to some other great contacts, soon I hope.
I’m really pissed off that I probably won’t be able to go to New Mexico in September for a getaway with the hubby as planned.

Okay, now that we have that off of my chest….

Nestled here in the trees of the great northwest with family and friends is not a bad place to be in summer. When mortality is questioned, I think we have these expectations of frantic thoughts about how much we need to see and do in life before the end. Not so for me, maybe because I refuse to accept the end is a close foe. Yes, I want to make it to Italy and write a book but I’m content laughing at Milo and having dear friends visit. I also seem to be thinking about all of the piles of shit in my house. I really want the clutter gone, it is too much and as I rest and stare out at the view, I don’t want to think about piles. I’m a silly woman at times. I’ve never seen London or the Grand Canyon and what I’m thinking about at the edge of a great mortal moment is my unorganized life because it usually is so tight. Lessons. Release expectations and thoughts of ridiculousness and continue to look upon the beauty of this green earth and the faces that make existing… all of our “Grand Canyon” moments.

I shall land in Italy the summer of 2014. I will get to New Mexico. I will see Milo turn 5 and then 10. I will continue to heal and move this cancer into remission.

“tonight i can write…”

 

“tonight i can write…”   (title inspired by a Neruda poem title)

Absent spring, absent with this spring, I was hiding. I finally have embraced spring, the newness upon us, this new drug, feeling good, finally weather to take a sweater off to…and finally a rebirth, a change.  Yet with trepidation of moving forward to this unknown, I was holding onto the feelings of a cloudy day.  I was absent from here, from me. Quiet inside.  But then, tonight I can write.

We spent the last few days enjoying peace and sunshine at the ocean here in the Pacific Northwest. Mountains gleam with winter’s snow in spring. There is so much to love about this typically cloudy locale when we are blessed with these days. I was reluctant to let myself enjoy feeling good, looking better, and the brightness in the sky. I was being cautious of the benefits of navy bean and it’s minimal side effects, as it is still an unknown cure for me. How very Italian Martyr of me, as if I “should” be feeling worse because I was miserable for so long.  The shoulds can really kill us sometimes. My husband clarified things for me by advising that well, if navy bean isn’t working, these weeks of feeling good would be wasted with my reluctance to enjoy it, and if it is working, then I have a head start of knowing what living  with this cancer drug will feel like. It was such a simple thought.  Later, I stared at my husband carrying our sweet son to the ocean, sun shining, waves crashing and realized that I wasn’t tired, I was hungry, and had just walked a good length.  I can now be present with spring, this new phase and continue to move forward towards the mantra of decades, of prayers for remission and hopes that navy bean is the drug of choice until this beast is bested.

No longer an absent spring I see.  Reviving my spirit to delight in the days of feeling good, even if the clouds roll in, I will awaken the positivity again of which I was reluctant to enjoy.  No longer an absent spring because tonight, I can write.