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.

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

My Electric Kool Aid….

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Well….with all of my breast cancer blog reading I definitely thought that I would have picked up the knowledge that AC looks like Kool Aid. Craziness! It makes me laugh at least, which is nice because I can’t seem to muster the energy for anything else. The Kool Aid & Cy-youngin’ are ass kickers! Which I am hoping means that they are cancer kickers too.

It has been a rough week. I began this new treatment Monday and had the post chemo steroid high through Tuesday but after that every day has been a gigantic chore. Little things, like um ya know, brushing my teeth….too tired. It’s impossible to be this tired and attend to my little one. We have had lots of help and thankfully my hubby has had a light work week but I want to attend to Milo, want to play and have fun with him. How does this work?!

It works with hope, desire, and perseverance. I think after this cancer crap I will be able to be a spy in Beirut or some place with intense need to withstand anything. Or be on the amazing race or some silly show like that. Yes, I have cried every night as I fall asleep wondering how I will power through to see Milo at all of the stages I wish for, and cry for the idea that he might not have his mamma around him always, but then it subsides and I awake to him and my hubby’s giggles and their tiptoeing into the bedroom to wake me up with hugs and love. Life is hard at times, beyond difficult, beyond torturous, yet life is so full of happiness and moments of love so deep that a stranger approached me yesterday to tell me how beautiful and happy I looked. He told me to keep smiling because it looked as if I was doing something right. He had no idea that I had cancer, that I was in pain and exhausted…..he apparently, saw something beyond cancer. He saw me and that is what I had been worried was missing from life. I had and have been worried that my little one would just see a sick mamma, and that our life was defined by cancer, as with each turn it feels as if it’s ruling the roost, but it is not. I am not letting it, damn it! No matter how exhausted this and these treatments make me, I am ME, so much so, strangers can see. So, yes, it is something painful to deal with…but right now, amidst the cries, I am moving through and smiling at the giggles and this glorious northwest sunshine. It is a challenge to spend too much time outside right now, it’s okay….I watch from our big windows and enjoy the soaring eagles fly above us.

Off to another Kool Aid Monday tomorrow, I promise not to drink it in though.

Expectant

Absent here, missing mind.
Brain fogs abundant as is the rain.
Running amok in puddles of mud,
Awaiting something people call summer.

A bright moon carries me, clarity returning.
Craning my neck to see,
Shielding my ears to better hear
and a taste returns with a week of rest.

A flash of heat keeps me warm until the sun rises,
Exposing the fog of the absent mind of not just me.

Challenge accepted

Another writing challenge has hit the cancer community, Ann Marie of chemo brain set this one in motion, so here I write, challenge accepted.

The question asked is basically what words anger, annoy, or irritates. I have to say high on the list for me is the shit storm of diet ideas that I “must or need to” follow. Though at times the advice is pretty good and often makes sense and are things I enjoy, sometimes it just isn’t practical practice. Firstly, I lost 15 pounds within two weeks when I was diagnosed with the return of my cancer and began chemotherapy. I could barely eat a cracker let alone a pile of kale and a blender full of beets. Now that my appetite is back, my nausea eased, I try to eat healthily, though I still taste metal for three days out of the week. Secondly, and news flash for Miss Carr and her band of guru’s (BTW: I really like Kriss Carr…however) my doctor, who is quite the bigwig cancer guru, completely debunked the whole alkaline/ph body balance theory and said he is all for healthy eating but as far as he is concerned a pastrami sandwich could stand up to half of the ‘cancer curing’ ideas out there. I get advice from my acupuncturist, advice from great books such as Carr’s book or The Anti-Cancer book, or The Gerson diet or the this, that and the other thing and all of them at some point contradict each other. Yes, there are some theories that across the board make perfect common sense and align, however as far as cancer curing properties, research hasn’t backed up any of the advice. So friends, family, non professional nutritionist and random French chick calling on behalf of so so, take your cumin, maple syrup, cottage cheese, and juicing alkalinity bullshit and tread lightly. Two months ago, I was living off of chicken soup and wheat grass shots, not a bad thing. I want the data but I don’t want your “shoulds”. I appreciate the love and cure alls but at the end of the day I just want to be able to eat a salad, and a bowl of linguini with clams with lots of reds, and maybe a glass of wine without feeling like “eeeek, uck”. (see my post entitled Flavor Fail)

At the end of the day, I was the healthiest eater I knew….lots of veggies, minimal red meat, and everything organic, and yet, I still got cancer, so why now will organic parsley cure me, yet didn’t prevent this mayhem within? Yes, I have a sweet tooth, but I don’t think a few bites of chocolate a week, some ice cream on occasion, and the PMS gummy bear craving caused my cancer. At the end of the day, I would of course try anything to rid myself of this disease, but I don’t need some distant aunt whom I haven’t seen or heard from in years popping up with emails about cumin and cottage cheese and how I MUST try “this or that”. Can you tell that I am irritated?

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.