Friendship and hardships

There seems to be an unwavering sense of solidarity within the cancer community, and most especially within the breast cancer community. I went through a minute of thinking because my cancer is now primarily Neuroendocrine cancer, I might not be able to speak of my ills and triumphs with as close of a connection to the women that I have befriended. Yes, stupid, I know, but all sorts of things muddle the mind when undergoing such trauma, pain, and emotional changes. We are all one, as maybe Bono might say in relation to global wellness. We are though. It isn’t as trite or over commercialized as maybe it sounds. The reality is that I was able to meet a friend whom I hadn’t met face to face before, without any awkwardness but with a clear sense of one another and our experiences. We met here within the blogging world of cancer. We had a lovely connection online and symmetry to some of the hardships. When I read she would be in Seattle it felt natural to try to connect. Such a lovely but short lunch and time together. I felt more like we should curl up with some tea by a fire and talk for hours than be in a loud restaurant. Honesty and clarity are something I crave within friendships right now while I attempt to heal; I am grateful for both my old dear friends and the new ones that can grasp this insane ride.

This time of year I always want to count my blessings, and all of you whom I haven’t ‘met’ are among them. It is through hardships that we can recognize the most beautiful friendships. So, thank you.

Staging and effects

The flames soar high out of my head with flashes that serve as a reminder to the illness inside. My mouth is singed, my heart gets weary and I found myself saying to a friend that I have begun to feel the effects of my cancer ‘stage’. Don’t get me wrong, this is not a giving in passage, perhaps it is the acceptance part of this cancer that I read of recently. Accepting I will carry this burden in some way or another throughout my days, may they be long and not so arduous though.

I began my new chemo. It is a pill, so fewer visits to chemo jail. I will go in for fluids, blood work and such, to keep an eye. It has been one week on the chemo pill, which was suggested by ‘the beyond state of the art’ cancer technology and sanctioned by my doctor. I just found out that apparently my cancer pathways are pointing in the Neuroendocrine Cancer direction. I am a rare bird, Breast Cancer that metasticized into this NC. This has been up for debate for a year now, and the technology confirmed my docs suspicion. It’s an angry cancer, so I choose to be calm….I’m not letting it get angry. This means those of you around me must face this with me in peace with little stress and minimize the blazing energy. I can be a tough badass fighter in a cool and collected way. Distancing myself from the realities of this stage, and just hold on….

This first week on Afinitor (A Fortune For…) has been okay, except for the return of the mouth sores yesterday. I wonder if this is just my body still needing to heal and having too much activity and nervous energy surrounding me. We have had an influx of visitors from the east coast. All wonderful, but tiring and having me feel weary from the questions. It is difficult to let go of my old self, the hostess and rest while they fuss around me; it is a stressor that I suppose I should not have right now. so, I meditate these sores will not be as bad as the last bout. Tomorrow I will receive fluids, get some rest in chemo jail, and hopefully learn that my white count will be normal. I need this drug to work and be somewhat kind to my body. I don’t want to start out feeling the effects of the high on the very first week. Supposedly I am to take this drug daily, though doc started me on it for only four days a week. I want to be well and ready to dissipate the angry tumors. The options are getting thin, so I need to work up to a week of this remedy. This drug is ‘a fortune for’, so it should work right!?

The cost and hoops of this drug makes me wonder…
If I didn’t have the insurance, the blessed connections in the medical research field, the support of generous friends….where would I be?
It has me thinking of those less fortunate and wanting to help in someway. I wish our presidential hopefuls were spending time worrying about the lives of those who cannot afford illness than the shit they dance around in tireless debates of rhetoric. This is a great topic that I, unfortunately, do not have the energy to write more of now…but it is on my mind. You are all on my mind.

“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

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.

20120909-182006.jpgI 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.

I’m gonna knock you out….

Mama said knock you out…don’t you ever stare….just call me Cassius…. (By LL Cool J)

Okay so I’m trying not to let the electric Kool Aid knock me out, but man I’m falling hard in the ring, and it’s all week long. I think it’s time for another blood transfusion. It is so difficult to not be able to help at all with Milo, or even do laundry. All I can do is sit and laugh at my baby, which I know should be enough…but I’m not taking this lying down! Just call me Cassius….

(Hopefully more later my sweets. I adore all of your comments and support and wanted to update a little. Be back soon.)

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.

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These are the hugs that keep a mamma fighting…