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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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?

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.

expect the unexpected.

Well shit. I really wasn’t expecting this at all.  At least now. I am certain this is a good thing, but I have to say, I was a little jarred, annoyed, and a bit “oh…no wonder I was craving chocolate and feeling a bit wonky”.  This may fall into the too much information category, but this is a blog mostly about cancer, and so far you have all read about my stinky scaly fingers, digestive issues, hair loss, hair gain, etc.  So why not now write about the return of aunt flo and all things unexpected on this cancer path.  Really, after two years?

Ironically, this week three people asked me if we were going to have anymore kids.  Now, I am pretty sure the past ten months of chemotherapy, beginning with crazy intense drugs such as chicken splat (Cysplatin) and Etoposide, switching into my Taxed, Stripped and Fucked cocktail and now rounding it out with some Navy Beans, has squashed my fertility, so the return of my period just served as some kind of poetic metaphor of life moving, plus it shows how much my body is enjoying the navy bean stew (I guess).  It was also quite funny to me that people thought I even looked like a normal person to ask me about more kids.  This means it didn’t occur to them that my punk rock, shaved hairdo had nothing to do with cancer, but was some kind of chic fashion statement because I like the shape of my head and enjoy some Fugazi when in the right mood.  What did MCA say…”yes, yes, y’all”.

I would like to talk about the jarring feeling of this unexpected.  I had emotionally worked upon dealing with several of these cancer side effects in a thoughtful process.  I knew from the beginning that getting through this was going to take a meditative effort of endurance and acceptance. I had accepted that I was in “early” menopause, accepted that even if my fertility wasn’t compromised that my body simply couldn’t handle having another child. I have made concessions and opened the door to the positive sides of these issues.  Rather than mourning the loss of my period and fertility, I knew my sweet son was enough for us, and how nice it would be to not have to deal with the monthly visits and headaches.  I was positive about the hair loss, saying to people, well..at least I don’t have to worry about shaving my legs or spending money on waxing.  Ahh, what we women choose to endure.  All of it is ironic.  A disease that affects millions of women takes away our bosom, and gifts us with smooth bikini lines and chins. I saw the positive. I see the positive, but the jarring part of this new stage of alternate consequence, is that the box I put those emotions into for safe keeping of my optimistic state is now empty of its effects.  My friends and family get excited with a little bit of fuzz on my head and I think about that scene in “The Princess Bride” when Andre the Giant gets excited over Wesley’s paralytic state changing with a little finger move.  Wesley says something like: “We have a war to win with only three people and a Holocaust cape and you want me to get excited over a little finger move?  haaa?”

I love Andre the Giant, so I am reminded that he had some wise words and said something like, well…it’s a start. So, do you see where I am going with this? My encouragement of  well this is a start, a return of the old me is present, yet the problem is that I feel the old me isn’t likely to return, and that is okay as long as there is a me.  A little finger move, or growth of the hair is not an indication that I am cured or that this is soon over. I think it has become a false positive for my family and friends. They see me looking well, having more energy, and that is a good thing, amazing in fact.  I am blessed, I am embracing feeling well and enjoying each day that I am able to play with Milo and go out on a spring evening with my husband. I am blessed because I have a box to fill with positivity, encouragement, hopes, faith, and a finish line. A little hair growth doesn’t have me jumping at the gate but it’s a start.  Maybe it’s good to be jarred out of the expected, keep the fight moving; I still have Stage IV metastasized breast and neuro-endrocrin cancer and need to face it head on.  I know I am a warrior calming the battle into retreat, punk this shit into remission, ya know what I’m talkin about? yes, yes, y’all.

“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.

Good Luck Navy Bean….

Navelbine really. I have a new chemo drug that I began this past Monday. It’s widely referred to as navy bean so says the nurses, and it just really does sound like navy bean! The side effects thus far have been pretty mellow, much more tame than my taxed, stripped & fucked cocktail. The protocol will be Navelbine, Herceptin, & Zometa. I get one week a month off! Lucky me.

I have been in a quiet space with this change because quite honestly I am nervous; I need this to work really well. After seven straight months of working the “say-no-to-cancer” angle and fighting the good fight, I had gotten a bit weary. Much of it was due to Tykerb hell, Taxol allergy, and shear exhaustion. My positivity was getting lost a bit, and the latest scans did not show shrinkage, no growth but no shrinkage. It is/was time to move to a different treatment and that is scary.

I have a good feeling about navy bean, because I feel pretty decent and that is what I need to keep my positivity up, which I firmly believe assists in this process. I am determined to win this little war inside my body, but after seven months of slow changes I am wanting a push. I am wanting the battles to gain ground and have my liver feel normal, my bones less creaky.

My doc won’t give me an end date to chemo jail but I am wishing and meditating to be finished by August. I, honestly, think this is an unrealistic goal considering how advanced this shit is, but hey what about this thing called cancer is realistic? Half the people I communicate with in this cancer community seem to be people this theoretically shouldn’t be happening to….but the ‘shoulds & whys’ don’t apply when life is on the line. We all live, breathe, and walk certain lines, some of us luckier than others, some of us more determined than others, some with love and life and death all mixed within. So when meditating on completion of my stint in chemo jail, I allow myself some wishful thinking, instead of why me’s, how about why not me? I get to best this beast into remission right, all by the end of this summer, right? Good luck navy beans, we have a race to win.

The map of my life is paved with scars, among other musings

This is me. Scarred on my knee, my heart, my belly, my right breast; scars of wanderings, scars of birthing, scars of illness, scars of which my life has created. I am scarred, but I am not solely my scars; they are roads on my inner map, my exterior markings. The word begins to sound so strange when repeated. We are all wounded somehow, sometimes we see the scars, sometimes we do not.

My right breast is gone, my sweaters cave in, as the energy to disguise this wound is nil. There is a thin red line where once lived a breast. And so what of it….I am over the scar tissue. I’m over being scarred by this bitchy whore of a cancer. Take my breast and give me my health. But that didn’t happen as all had thought. They took it, my bosom was halved…they weren’t all that big to begin with, but nicely sized for my body. I wonder how it looked on the stainless steel table all detached and emptied of my soul.

Generally, as apart of womanhood, we believe these beings define us, as they attract, they heave, they feed, they often comfort and Venus stands before us, armless with her breasts beautiful and exposed. They symbolize the core and beauty of a woman in many an art form. What I have learned by way of cancer, of life with astounding women to learn from, is that this is not the case. While our bodies can define us if we allow the world to tell us so, these breasts do not speak to the power of the woman. The core of a woman is her strength, her bravery in life, motherhood, sisterhood, friendships. The core of a woman is the depth of her compassion and love. Beauty is beyond the boob. Strength is within the scars we bear along the path to womanhood.

I was inspired to write about scars from two fellow bloggers. Bill gave me a unique perspective from the male view of the body in his post: http://bwthoughts.wordpress.com/2012/02/25/i-think-i-can/

And by the photos in I have breast cancer’s blog

Thank you for the inspiration to give my perspective.