If only…

…I had to worry about the tank being half empty. But hey, I voted from chemo jail, after chasing a nearly two year old around all morning with a bad cold, etc. I am not measuring the exhaustion level, only giving perspective. I know people are cold, hungry, and need the tanks full to get to work, but being a New Yorker I think I can safely say that comforts get too comfortable.

I ask my friends back east to take the key out of the Hummer and put their foot on the bicycle and get to a polling station with gratitude that you have the energy to ride a bike, and are able to vote.

Does this sound bitchy? I guess I should get off Facebook, too much complaining about gas station lines.

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.

Sent from my chemo jail…

Excuse the typos as I’m writing with half a brain due to the concoctions scientists devise. My chemo brain has a film of grease, a layer of cloudy with a chance of hairballs. Excuse the dark wit as I am writing you from chemo jail. It’s sunny outside and 73 degrees. This is April in Seattle so….I’m going a bit crazy in here.

Post chemo jail, my mind will be fuzzy and I might even walk like a drunken sailor, but it’s four blocks to my mom’s apartment, and sunny, so I am walking.

Walking in a fog, feeling hungover, even on this easier treatment I wonder how people go shopping, run errands or really, carry a conversation after chemo. I overhear all of these grand plans in the chairs next to me but I’ve never felt the reality that some of you feel. Seriously? You really go grocery shopping and cook dinner after chemo? I can barely eat dinner! This must be a front, I always think to myself. Today I got to walk to and from chemo in the glorious sunshine and that was a pure gift. My 15 month old escorted me, with his Nonna, another lovely gift. Still, I am fogged over and warning those who received email or read this that it has been sent from my chemo jail…I really should change the sign off tag on my iPad.

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.

A day in the life of cancer…

What a day, what day, what a helluva day.

I took a break from chemo jail this week for being plain exhausted, and needing my body to still recover from the Eye of the Tykerb. I think I was kidding myself that I would actually feel good today. Last night, I felt a funny shortness of breath walking up a normal flight of stairs. This morning the same thing happened, plus I thought I was going to pass out after my shower. Seriously? What next!? I called the doc, and they had me come in for an immediate CT (we call it meow) scan! Okay…that didn’t make me nervous. Um why? Well, we want to rule out a pulmonary embolism. Uh okay, I’ll be right there. So, I headed in and got the meow scan, and nope not a PE. I did have to meet with the oncologist though…oh boy. My hubby had his fears and met me there; I was just baffled to have another issue piled upon the shell of my poor body. Apparently though, I had developed an allergy to the Taxol. So, I am done being taxed. My hands will hopefully be thankful, the cancer…well, here is where we find the faith. It was going to come down to a decision sooner or later to do a treatment change because the taxol is, well, really quite taxing after 7 months of weekly doses. Although, I left the docs office feeling completely drained and teary, tonight I have a good feeling about this forced decision. I am putting faith in the gods for handling it for us…that for me, there is a better, faster working treatment plan.

Faith is funny. Religious or not, we must find it in something. I really feel okay about this, though with a dash of fear the next dose of whatever will take time to adjust, and most likely have some kind of side effect to dazzle me. I have to have faith the new drugs will work as well if not better. I accept nothing less. I ask for all of your faith, musings, meditations, or feisty wit to put energy towards my continuation of healing. We can’t afford to lose ground on the progress made. My little guy needs his mama back in action soon!

Still keeping the calm…. (Lord knows how… Oh yea, faith)

Look good, feel good?

Make up lesson in chemo jail from one of my lovely girlfriends.

This Monday wasn’t so horrible, but I did have to kick Tykerb to the curb again… we shall see what the doc says about that, but at least I am awake and can function this week.  The make-up lesson helped….ahh it felt nice to feel like I looked a little bit normal, and give myself a boost after the intense side effects of that crazy drug. Now if I can only muster the energy to make myself up like this at home on my own.  One step at a time.

Flavor Fail?

A little background so you all can understand the drama in this side effect…My husband is a chef, my mamma is Italian. W love food in our household. We like to eat well, enjoy wine, throw fantastic dinner parties, live sustainably when possible, etc.etc…

This chemo crap has really cramped my style, my pallete. I don’t miss the wine as much, my drinking was occasional, but God I miss good food. My diet consists of as much healthy veggies/juices as my belly can handle, but really all I can stomach these days are bowls of plain pasta with chicken broth, lentil soup, and maybe a tuna melt every now and again. In fact, licorice and gummy bears are really what helps the metallic, shitty taste in my mouth…and ginger ale helps the nausea. Ginger tea, and healthy options are attempted and sometimes they work, but overall…uck, ick and sigh is the general feeling and answer when asked what I want to eat.

Tonight, feeling totally defeated by this Tykerb, I just wanted a tasty meal. Don’t get me wrong, the lentils my mom made were very nice and yummy, but how many days can a girl eat lentil soup?! I miss going out to dinner, I miss our dinner parties and sitting around an abundant table with food from hard work and love from the kitchen. I miss the girl, who was the President of Quillisascut Education Fund QEF , a non-profit that provides funding for educators and students to learn about farming, food, sustainable practices, etc. Now, I have to be non-dairy and cannot eat a slice of cheese from the farm I so love. I am complaining right now. I know this part of me, of us, of our community will return and most importantly the kitchen love is still present. Yet, I think of how far I am from eating locally, practicing what I preached on the board of QEF, and oh yeah, there is nothing sustainable about cancer. So many toxins, so much waste in hospitals, and um no flavor.

I just wanted dinner tonight. A bowl of pasta with clams, lots of garlic, and red pepper flakes, or pizza, yummy brick oven pizza with my friends homemade cheese, the prosciutto from the pig we butcher, or a giant bowl of greens, with polenta, maybe some rabbit. My hubby writes the menus but all of that ‘sounds’ great. And when I can eat, I will be focusing on a veggie filled diet, juicing (which I do at least twice a week), and limit the carbs to more grains for my ‘say no to cancer’ health. I love grains such as quinoa and that works on occasion, but really now, I am in Flavor Fail mode.

Todays meals:
Raisin toast & a banana
Carrot, apple, ginger juice that I barely got down and a Wheatgrass with ginger shot
Pastina with broth
Lentil soup
Licorice

Rewind, repeat….

It’s Saturday already?

Every Monday I head to “chemo jail”. Last week was a 5 drug week with an addition of Tykerb today. I am officially dosed. I am not ready for this Monday. Usually by the weekend, I have some semblance of energy and a bit of pep but this week is off the charts with difficulty.
Here is what a Monday brings:

It is coupled with the most amazing nurses, a beautiful husband, and truly lovely friends visiting. Keeping the calm…..

it has been a long time…

I write. It used to keep me sane, allow for venting, allow to heal…but it has been a long time.

My hands hurt from the chemo. Nobody ever mentioned this side effect. The hair loss, we all know about, and the eyebrows & lashes dropping with ever tear…I knew this would happen. But my fingernails?!? come on! My hands are too sore to type, write, or ipad swoosh these days. I suppose I can speak into a tape recorder, but it is not as cathartic as the swift type of a key on a typewriter or keyboard, or the pen to paper in the journal. Just another side effect.

I have been so positive. I am hopeful, truly. I have to be, I have a little baby about to turn one in a few days and I am determined to see him at 21, 31, 41 etc. However, I am painfully exhausted from this process of healing. Chemotherapy just doesn’t seem like therapy or healing. I couple it with acupuncture, attempts at meditation, breathing, teas, herbs, wheat grass shots, and as much veggies as my chemo’d body can handle, yet still I. am. tired. Just over six months into this aggressive treatment and I wonder how people do this for years? How they work through it? Are they all getting taxed (Taxol), stripped (Streptozocin…spelling?), & fucked (5FU)? Yup…I came up with these funny and messed up little ways to name the dreaded drugs. It keeps me sane for the eight hours I sit every Monday for my treatment/bloodwork/doctor visit process. I don’t know, most people I speak with in the chemo waiting room seem to only be on one kind of treatment so maybe my doc has faith in my stamina.

I usually do, but seriously….stinky cheese hands with peeling finger nails is fucking nasty. There is a laundry list of other side effects, but I’ll spare you all.

I want to write about this for myself…to clear my head. I want to write for others, to share some of this shit we must go through, and maybe assist with another’s journey, and to write for my husband and son who hopefully will get to have me around for a lot longer, but if not…well…I want Milo to know how hard his mamma fights to stick around for each birthday, and that we should never give up…even when our fingernails fall off, we at least still have our fingers and hands right? So, I am going to not let it be so long and keep this blog going…even if it is just a snapshot from the chemo waiting room to say, I made it through another week. I made it through today’s hours of CT scans with a dreadful cold. I let the radioactive juices cool and came home to my sweet son and fed him dinner. So today wasn’t so bad… yes, my hands hurt as I write this, but may they bleed with determination as I hit each key.

with gratitude, j.