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.

Chief and my 2012 self: words of explanation

I was inspired by all of the recent blogging challenge posts or perhaps, posts of solidarity, especially from Renn at The Big C and Me, she had a great request. So I thought I would try my hand at this form of inspiration. You onboard?

Here is one for my lovely readers (the few that are out there;) post a photo or self portrait or other form of visual art (if you are not comfortable sharing your visage with us) of yourself that describes who you have been within the last six months.

It was Carol’s self portrait post that prompted me to add a recent photo of myself taken by my girlfriend Cheri Pearl. It isn’t a self portrait though maybe a bit of a collaboration. Cheri has helped me document some of this bullshit cancer process, and I am drawn to the idea of the back of my head as a reflection of who I have been during the past six months of my cancer process. I had been distant, pain filled (I think you can see how my neck is a bit wonky), sorrowful, and not wanting to face life as head on as I would have normally. Yet I look towards Chief (our bison skull) with hope and faith that there is someone keeping watch over me, us. I’ve sprung back to life within the last month or so, maybe I’ll have to add another photo soon of this forward movement stage.

Chief and my 2012 self: photo

 

Photo by Cheri Pearl: http://www.cheripearl.com/blog/

navy beans is in the stable, results are in….

Those who graciously follow my story, this blog, know that recently I had my latest scans.  Before my “cancer-cation”, I spent the day at the cancer care center soaking in some radioactive juices and then soaked in some saline fluids to wash away those juices, and boost up my blood pressure which continues to be as low as those pesky mosquitos.  Anyway, it was nice to actually have all of that time to sit and reflect on how much support we have had during this odd stage in our lives.  Thank you all for the comments and reactions to my blog entries, and if I haven’t replied to them all, it is merely due to chemo brain or tired nights, but the words of encouragement are more than appreciated!

I had begun a new course of treatment about 7 weeks ago, Navelbine…Navy Beans.  After an allergy to the Taxol, we had to go through the experimental process of which drug to try next, navy beans won out.  The side effects have continued to lessen and my quality of life has vastly improved, aside from my colds, I have really been feeling so much better, lots more energy; sometimes I can even keep up with my little one! So the prayer was that I can stay on this drug, and that prayer was answered for now…and hopefully until we reach remission.

The results weren’t astounding to be honest with you….there was no change in tumor sizes.  I was disappointed and honestly a bit fearful of the what if’s, however, as I have written, as my best girlfriends says “slow and steady wins the race”.  The doctor is positive that this treatment is working and that we just need to give it more time.  He feels stable is a good thing, considering how fast this cancer was originally moving.  He was very happy that we saw no growth and feels that I am doing really well. I continue to feel truly blessed to have great care, a great community, and feel good about this next phase of treatment.  I am still going with my mantra of decades to live and the hope that we can hit this cancer bug into remission soon!  So let’s continue with the ‘Go Navy Beans!’ fight song.

a cancer-cation

In our current culture we seem to be fond of the fusing of words. I don’t love this trend. However, at times it is mildly funny. I just had a cancer-cation, ya know, like stay-cation, or like bennifer, or jlo, or whatever.

A cancer vacation should be on the agenda for all of us going through this harried process. It would be nice for one of the several foundations that supposedly assist those with cancer to somehow provide a lavish vacation for healing. I feel blessed to have the family and some resources that gave us this time away. The past 9ish months have been taxing, and while we would have gotten through without this jaunt to sunshine, it was a most welcome and needed rejuvenation. Thank you.

Rejuvenation of the spirit and body is important in life, with or without cancer. We are a distracted culture who shortens words, and forgets to breathe…maybe that is what gives some of us this disease, who knows. Though I am currently not working and have some time (as much time as one can have with a 15 month old) to breathe and heal, it is difficult to meditate on wellness with looming appointments, schedules, and a house to attempt maintenance on, so I needed a cancer-cation. We all did. My family works hard at sustaining this cancer lifestyle, so we took a break from it, barely discussed it aside from the coughing up a lung part that was difficult to ignore, but even still, we rested. I even drank a quarter of a glass of rose cremont!

Walking the tropical paths in the warm sun reminded me to breathe and to live with this unknown future. It is in living that we thrive, I was reminded. For a better part of the last 9 months it felt as if I was just maintaining my existence. Always positive about my future, I still didn’t truly live my life. This past week while watching my son, my family completely enjoy each other, I truly realized the importance of each singular day.

The 8th of May

It’s already my birthday, and I feel blessed to have one.

Though the thoughts of how many more I will have loom within the celebration of me and my day. I had a lovely time with my family. My sweet son’s voice could be heard by many, singing mama, maamaama, mama, beaming with hugs and love. Watching him simply be, is the perfect gift. And then the mind wanders of how long I get to watch him grow and be? I remind myself that I will have a long life with him, experience all of his adventures, and share smiles.

I briefly think, can I not just have a clear May 8th? A thought free of cancer and my longevity? It was a beautiful day, I have so much love around me and I want to enjoy it without furrowed brow and worry. So, I ordered bonbons by the pool in the hot sunshine of our Hawaiin vacation, knowing that amongst all of this cancer crap, life is still beautiful.

I must remember gratitude. I must remember my smiles and breathe my furrows away.

yes, yes, y’all

http://beastieboys.com/

Another sad and too soon loss. This one hit me hard, such sad news during a week of pins and needles awaiting the results of my latest scans. I grew up listening to the Beastie Boys, their music defined a great part of my youth; I feel so connected to his journey with cancer and his work.  Farewell MCA, Adam…it was an honor to have met you back in the day.

Live your life, sing your song, dance your dance, and love with truth for life is never as long as we wish.

Radio activate me

It is time for me to drink in the juices and see how the navy beans have turned out.

Getting my scans today and having faith that all will turn out to be positive news. As I drink another strange cocktail, I realize that I have become accustomed to these cancer days, or routines. I know what to expect of the flavor of the day, which is a bit comforting (while also discomforting) when facing the unexpected, when facing decisions that are beyond our control. For me, it is important to carry some baggage to chemo jail, to these days of scans. Literally, my chemo bag…though I’m sure the other kind of baggage is pretty present too. There is a lot to sift through and I like to have it all handy. I like to be able to write, to drink water, sift through the fuzzy brain and search for thoughts on love, life, and the best way to raise my son. I’ve expelled worry as much as possible, and attempt to leave doubt under the rug somewhere far away. My chemo bag must be filled with safe comforts, I try to rationalize the negative baggage, and if I can’t, simply save it for another day or for the person that is apart of the thoughts. Usually while carrying heavy bags, they are filled with expectations of another, so I’ve learned to give it back to them. I can’t have shoes that don’t fit in my bag right now, so there is a quilt (made for me by a friend’s mother’s prayer group), a journal, licorice, and love.