One day at a time.

I survived the week! Luckily I had a good companion to help distract and push the time by at a rapid pace. Can’t believe tomorrow is the day. Tomorrow I go in for my first appointment at the cancer center. Terrified. I’m not sure what to expect from this appointment. That alone is scary. Isn’t it? Fear. Fear is an illusion, it’s our imaginations left on their own, like unsupervised children, fear goes wild, it runs as far as it can and if we don’t watch it, we too become tangled into that mess. Fear, it’s the minds pretend play, ego’s favorite thing. My partner asked me during a very scary time to list my fears, so I did. We then kept checking back and sure enough, one by one those fears dropped away, never coming true, not even close. Such a large percentage of fear never leaves the mind yet it is fully capable of keeping us up at night, robbing us of good times, good food, good love, breathing, smiling, fear is a bitch, yea? I fear a lot. Ugh.

 

I can’t say enough about the people that have helped me through this week. Tiffany, even while facing her hysterectomy this week has been so supportive of my fragile ass. She also pointed me in the direction of another support group on Facebook called, “BRCA Sisterhood” what an amazing group! They ladies there have really helped. Sometimes just someone saying, “you’re not alone” is enough to push you to the next minute, then the next and soon you’re out of your head, the darkness, the scary stuff. BRCA Sisterhood has done that. If you’re reading this, look there, you won’t regret it.

Also, FORCE (Facing our risk of cancer empowered) what an amazing name, huh? I haven’t gotten to fully use their services but have gotten in touch and received the warmest email informing me of books that might help, a seminar, words of encouragement etc. Again, just someone stopping to be nice during these times is enough to move you to tears.

Another unrelated to BRCA contact we made this week would be meeting some members of the Chan Group here in town. Ever feel like you’re meant to be at a certain place at a certain time? This was that moment this weekend. All of a sudden on the way home we find ourselves detouring and walking through an Asian festival where we sampled vegan food, watched beautiful music being played and met the Chan group. A quote from their site, “The teaching starts with facing the self, accepting the self, maturing the self, and eventually letting go of the self, which is awakening of wisdom and compassion that leads to harmony, peace, and compassion for the world.” Meeting the spokesperson for that day and hearing that peace in his voice was amazing. I long for that. I need more meditation, yoga and family in my life. He could not of come across a better family. We can’t wait to get over there for a day retreat soon.

In other news, my Dr called today and informed me that my blood work showed I am pre-diabetic. Well crap. It appears that 60+ pounds I’ve gained in 2 years has caught up with me. This wasn’t shocking exactly but was still a mild surprise to hear formally. I’m aggravated with myself. This is a turning point. For sure a wake up call. 30 is not messing around! I think the Universe is telling me to get shit together already. This is my year, damn it.  Since the start of learning of my BRCA connection I sort of grew more rigid in veganism. It has always been there, always circled back to it, always wished and hoped and sometimes even maintained a vegan life for extended periods of time. But this time. Yea. My life depends on it. My sanity. My everything. For me, vegan is my souls language, my body responds in ways that are truly a miracle when I stand strong in veganism. There is no time like now for a miracle, am I right?

So that is where I am. Getting ready for this appointment tomorrow, then a couple more on Friday, then a big 41 farm tour over the weekend, then the littles birthday soon, big test days for me and then….who knows. Hopefully good stuff, yea? I’m ready for that. The divorce was hard, these are supposed to be the easy years, right?

Wish me luck tomorrow….

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Sometimes breathing is the hardest part.

We seemed to of skipped all of 2012 and almost all of 2013 as well. I promise not to do this again.
So much happened in that year and a half, we moved, 3 times to be exact and now we’re staying. At least for a little while.  But of course you know this. Lets not sit here and rehash the past! Lets talk about now.

We’re still very much “making it matter” in fact more so in so many ways than I originally thought we would! We have done things like take a personal vow to not buy new. That’s had it’s extreme challanges, some exceptions and most importantly it’s proud moments. We’ve surprised ourselves so many times! Each time we willed another needed item into our hands I thought, “the blog should know about it” alas, it’s all behind us now. On to new things!

I turned 30 not long ago and everyone jokes, “oh just wait, this is when your health craps out!” And I would think, “Yea right, I’m going to enter 31 in better shape than I was at 21!” (I was pregnant at 21, God lets hope I’m in better shape at 31!) Finally I got a really good insurance plan (see, getting “old” makes you excited about these things) and eagerly made appointments. It had been a couple years since my last pap smear so I made that appointment first, got in right away and then…the bottom fell out.

You see, my mother tested BRCA 2 positive recently after battling breast cancer a few years ago. Her mother has gone toe to toe with various forms of cancer over her lifetime as well and now has a full mastectomy, her sister fought hard against her cancer, and cancer did not back down. We lost her.  I’ve held my Grandmothers hand through biopsies, tended to her after mastectomies, driven 4 hours on chemo days for my mother, cut my hair along side her and stood in tears at my aunts funeral. Cancer did not resonate within me, it infuriated me.  Cancer is a coward that hid inside of the bodies of the women I love. Cancer took strong, amazing people from my life, yet I did’t feel anything toward it other than hate. Then my mothers test came back. I hadn’t heard of BRCA 1 o2 2 or anything for that matter. I know, I know, where have I been? Angelina is the president of BRCA1, don’t you know?! No I don’t! I knew of her procedures and why, yet that detail didn’t stick. Remember the downsizing thing? Yea we don’t have a tv, or cable, I don’t keep up on the day to day of Hollywood, or anything for that matter. (Thank you Grandma for warning me about that tropical storm!)

So there I am at my shiny new gyno’s office, normal nervousness about that sort of visit. It’s not everyday you meet someone and within a couple of minutes you’re flat on your back only calling one another by last names. (Maybe this is typical for some of you….) So any how we did the routine chatter about my family history, her pen running out of ink as I chronicle my maternal sides cancer bouts. She pauses on my mothers history and asks me, “BRCA 1 or 2?” A bit of urgency in her voice.  “I haven’t a clue, the serious one? ehh…” “I need to know, that will tell us what our next step is…” she drives this point home with enough force that I’m touching bases to find out that answer before being in my car. During this visit we discuss polycystic ovarian syndrome, it coming with increased risks of all sorts of cancers on it’s own, the fact that I have a few little cysts on my cervix and wall and a briefing on BRCA 1 & 2. I ask what the difference is and she glossed over it, “With 1 we will have you in for a mammogram yearly, with 2 we will subtract 10 years from the youngest person with cancer in your families age and have you start then.” The idea of waiting until I’m 35 to get a mammogram when I’m this high risk was not at all satisfying. We wrapped up, I left with estrogen to start taking to try to trip my illusive periods and my head in the sky as I pondered these mutated genes she kept insisting I know more about.

That was Tuesday.

That night I was sort of mellow, not informed enough about BRCA 1 and 2 to really panic yet, ya know, that sort of awe inspiring calm that ignorance brings.

Wednesday I googled a lot, I contacted the 1 person I knew who had been tested recently, Tiffany. She is a friend who is also head first on her BRCA journey as well, she’s actually going in for her hysterectomy this coming week. She got me. She understood that deer in head lights, holy shit feeling I was in. Then like a warm wave it just crept over me, my appetite went, my sleep went, it all was used up and buried inside as my mind both raced and blanked. All I could think about was the unkown, all I could feel was fear. I tried to sleep. I didn’t cry.

Thursdays are fun. Our mornings are fast here, we have to get up, get the little up and ready for school, get breakfast made and out the door all while tending to dogs, a pig, goats, tortoises, a farm is not an easy job, who sold me this!? Any how, Thursdays are different in that I put deodorant on and volunteer in littles class in the mornings. This morning was different, the kids were all in matching shirts and more excited than usual, why? This day they were doing a fundraising marathon type event. Our little had collected her pledges and planned to run her little buns off. I was so happy to get the chance to be there, to take 150 pictures, to laugh with her and cheer her on. I really was. Yet all the while this darkness was lurking, this damn BRCA thing! I couldn’t stop thinking about it, how I wasn’t happy with the talk, how I wanted to grab this bastard by the horns and freaking smash it. I wanted it all right now. Tiffany said this journey is about patients. So there I am stapling future tests together during my volunteer hour when my phone rings, it’s my Dr, they’ve decided to refer me to the cancer center. Radio Silence. There it is…there I am in the same sentence with cancer. Me…this is happening. This is it.

I’m numb. I finish my task and sit there staring blankly. My eyes brim with tears and I fight them back. I will not do this. Cancer or the potential for cancer, mutated genes, all of it, they will not bring me to this. They will not barge uninvited into my life and fuck up my good day. I’ve had enough. Universe, kindly back the fuck off please?

We go out and I cheer her on, I laugh and laugh in the hot sun, thinking of how truly truly terrified I am as I watch everyone else just horsing around enjoying themselves without a care in the world. Here I am feeling singled out by life and ready to just ball my eyes out. Luckily the race wraps up and I make it to my car alone, where the tears fall with no effort. I allow this…this moment, just take it, I’ll give myself a minute to cry about it then I’ll straighten up and get on with my day. Yea right. I’ll go inward so far I can’t see anything and simply sit in silence for the rest of the day, still unable to eat. That’s what I meant to say. These words can not adequately do anything justice. Terrified is simply skimming the surface of the emotion at hand. I had to hold in this feeling all day, this was a day I had no interaction with other adults thanks to a new move and a lack of new friends…this was a day like no other and all I wanted was a hug.  It was one of those mom days where you pick the kids up from school, do the errands, get groceries, make dinner, take care of the animals and hold yourself together until after everyone is in bed. It was that day. Tiffany pointed me in the direction of a great group online for BRCA folk and their journeys, this was for sure the day to check it out. I’m glad I did, granted it was no physical hug or the power of touch but it was a blessing all it’s own. Dozens of people came forward to welcome me, to understand my fears, the day I was on, to listen and advice. I can’t wait to get to know them better, to share my journey with them, to see where my journey goes.

Just now as I typed that last sentence I had an out of body experience. All this time I’m writing and not thinking about BRCA and then it hit me, cold and hard, yea, you’re not telling a story asshole. You’re living this nightmare.

Friday. Today. Breathe. Breathe. Breathe. I’ve let myself cry, not just cry but truly sob, scream, ya know the one. It seems like all the tears are gone and then something else I hadn’t thought of comes up and a whole new batch of tears show up. I’m scared. I’m really really scared. I faced a 2 year long divorce and  wasn’t this scared…ok maybe sometimes. But this is clearly different! This is happening. This process, this journey, this whole thing. It’s real and in slow motion.

I have my appointment with the cancer center next Thursday. This is where I will get my BRCA testing. Where we’ll chart a course and where I will lose either way. Positive or negative.
I have my ovarian ultrasound (checking for abnormalities and polycystic ovarian syndrome) and previous blood work and pap results Friday.
The BRCA test will come back??? This test will tell one of a few things. It will say I am not BRCA negative, woohoo, right? Not really. You see coming from a high risk family BRCA is almost a blessing in that you get to be ultra super proactive. Having a negative result will not mean my chances are low, they will mean that they are still as high (but not from BRCA)  and that I will simply get routine mammograms, stay on top of my check ups etc and hope to all the Gods that if something were to come up that we catch it in time.
It will say BRCA2 positive, this means that my daughter will also be. (Enter in a whole new level of depression)
It can say positive and that I’ve inherited my mothers working copy, which means my daughter will not have this.
It can say negative (survivors guilt etc)

It’s hard to stay on the day to day when your mind wants to race to prophylactic mastectomy, hysterectomy, low dose chemo for life to decrease cancer odds and the thinness of your sanity.
I started my hormone meds today.
So this is where I am. Friday. I can’t word to you how ungodly awful I feel. I am in pieces. Truly. I’ve faced mountains before but at some point something has to be bigger than me. I worry about this one being it.  I am scared. I am terrified. I am putting my partner through such scary times. I am lashing out at her like a scared caged animal. I am numb and yet in so much pain. I want to run away.

This is 30?! Someone said my back would go out, no one mentioned this shit! My life has not been easy, it’s actually been pretty hard and this seems to just fall into place. I don’t get it. I need a break.

Everyone keeps saying, “oh you’ll be fine!” or “You’ll get through it” You do realize nothing is impenetrable right? I’m fully capable of being beaten, broken and totally irrevocably shattered. In fact, I’m part way there!

On Thursday we take a test and wait. Lets see where I am at that point. I hope this gets easier. I need it to.

{On the road again…}

Morgan left for Boston yet again that Sunday night and Raigen and I spent the rest of the week exploring the area. And by exploring I mean traumatizing ourselves in the oldest cemetery I’ve ever seen and oh…it was kind forgotten about so it was overgrown horribly which added to it’s creep factor.

Things that were said while on this adventure “What is that smell?!” and “Ugh what’s with all the bugs!?” Those were from Raigen, I was too busy falling into random holes (OI!) to speak words other than “omfg!” Needless to say I got lots of images on this dreary day then got home to think back on it and go “What in the hell was I thinking?”

That Friday I got to borrow the father in-laws car and go to Boston with Raigen! Yay! It was my first long distance drive out of state…I had borrowed the car a couple times but never went further then 10 miles and that was just once! Ha. Luckily it was almost all highway driving for the 4 hour drive between towns. It was only mildly hairy on the rotary things, god! I just clinched my butt cheeks and hoped for the best!!! Hey it worked.

Look kids, a big homo trying to sneak up on ya! Hahaha, this is my favorite picture of them! Mo’s never looked like a bigger creep and trust me, she can be creepy…this one takes the cake.

We spent the first night just wandering around aimlessly. We had dinner at the place we ate at the night I was there alone, P.F. Changs and then wandered back to the car which ironically was parked in the same spot we parked in when I was there alone! This time it was pouring down rain, ew. We were staying at the house again…the crowded house with all the creepy things. It seems the majority of homes in Boston don’t have central air, it’s so strange. In Florida almost everyone does, rarely do you see window units and window fans unless you’re being green or just can’t afford it. In Boston it’s standard, while I love how green that is I hate how shitty it is when you’re sleeping in a crowded room with no circulation and in a bed that’s closed in on 3 sides…dear god. Oh hey and it’s also a twin…yea, wicked awesome right? We did a really good job of coming home later in the evening when it was a few degrees cooler at least but I still slept really hot and tossed and turned each night.

Any how, the 2nd day we slept in a touch before getting up and going to The Other Side for breakfast/lunch before hitting the city

Coffee there = orgasmic. Lordy. Haven’t checked their bathrooms yet! PISSER!! After that stop we wandered up and down the street nearest which housed Johnny Cupcakes! Interestingly enough Morgan was talking to me about him that week but I didn’t hear the name. Back in the day during the height of my cupcake obsession (as if it’s declined?!) I had read a little about him or more so his products but never looked into his shops and stuff. Wow!! I was so amazed…crap, what a freaking great concept and execution! His Boston location is the cutest shop I have ever been into. I still can’t get over it. I am in love.

~*~That entire town has really inspired me to remember where I said I would be as an adult and what I would be doing~*~

After marveling at the shop we walked down the street a bit more and just took in all that Boston had for us, one of the things was a street magician (god I love street performers. I told Morgan it’s on my bucket list to sing and play guitar on the street one day. I love side show folks too but I doubt I have any sort of talent for it.) Raigen was picked almost instantly to be the magicians right hand girl. He did typical stuff with her, making things appear and disappear from her tiny fist, turned her dollar bill into a 5 dollar bill etc It was great and made Raigen’s day.

I am so very happy to of had the chances this summer gave me and us. I am so blessed for the people that this life has allowed me to cross paths with. If it wasn’t for a few key choices, a few amazing people and life giving me everything and then some, I wouldn’t be able to even sit here and imagine the memories we now call our own. There is nothing I enjoy more in this life then making memories with our daughter. Seeing the world through her eyes is brilliant, it’s like seeing everything for the first time. She teaches me so very much, she’s the person I am most grateful for.

Next!

One of the interest things you find yourself doing as a parent…or creepy person with out a child and a lot of cats, or time…is adding voices to random things. This was already a slight habit pre-child so now that I have a reason to be talking in odd voices and at random times…it’s gone from weird tick to obsession level at times :/ My best act yet is that of her beloved lovey, E.T. Yes, THE E.T. Our little man became part of our family in around V-Day of 2010 when we came out of the E.T. ride at Universal Studios and into the gift shop where we were bombarded by 80’s E.T dolls and a few kids with scared expressions. Out of all of the dolls there, we found one with a little red coat on, clutching a teddy in his little arm and jammed together with others just like him…so you’d think. Raigen looked over each one carefully until one spoke to her, this one would become her son, my Grandson and to date…be an active part in our day to day.

There are few things in life as magical as a child’s imagination in full swing, if you’ve seen it then hopefully you took the time to put your cell phone and latte down and enjoyed it, if you’ve not only put those things down but encouraged it, God bless ya. Of course I gave a voice to E.T which would turn into a whole life, a wardrobe, likes and dislikes, jokes, songs, bad habits, potty training and so on…I dunno who enjoys him more, her or I. Sadly her father and his parents don’t encourage this innocence. Forcing her to leave her E.T. behind, taking off his collar (Which has a tag that lists my number under “If lost, please phone home”) and forcing him back into toy world versus therapeutic stress relief. Life isn’t fair sometimes, adults are pretty ignorant at times. Any how, Raigen and E.T. flew for the first time, went to NY then to Boston, they both explored their world side by side and yep…even got into their bathing suits and played in Boston fountains together 🙂 I love her and her little boy.

 

 

 

Another fountain in downtown Boston. We loved sitting there in the sun and watching the kids play and the folks mingle.

 

We had such a wonderful time at the parks in Boston. It’s such a perfect city for us. We love walking and exploring and just enjoying our days together in whatever way we can have em. Being able to shop, eat, people watch, play, swim, run and laugh in one small block is awesome. This is one of my favorite shots of Raigen in Boston. She had such a great time with this little squirrel. I adore this picture.

We spent an afternoon at the Boston Children’s Museum and had such a great time. Out of the 4 floors of hands on awesoneness, Raigen had the most fun with this center 🙂 She sat there for so long and put all the little screws in while proudly wearing her safety glasses. I was impressed that they had a saw and files… :/

They also had an authentic Japanese house which I was the most excited about AND a pitcher of honey in the cafe by the coffee…how epic. Usually people are such epic Nazi’s with honey for your coffee.

As soon as we walked in I could smell bubbles and yay, it was one of the last spots we found. It was such fun. Gosh I love bubbles. They also had this insane ball room. It contained all these slides and chutes etc for golf balls, combine that with a million kids and you have soooo much motion your head will spin. It was worth it 😀

After we took a walk on the boardwalk, I miss the smell of the water and docks, gosh I love it. That night we went downtown and I had coffee oreo ice-cream from JP licks (I’m hooked!) and watched more street performers. Then right in front of Harvard, one of the oddest moments took place…

We were wandering around trying to find the car at night when all of a sudden the silence of the street was filled, slowly it got louder and louder and all of a sudden, there on that street, just us 3 standing there, eyes wide and mouths pushed into shocked grins…we experienced a sorta flash-mob. But on bikes, all home-made or modified, with lights and glow sticks and glitter and lace and radios and oddness. I think someone might of been on a uni-cycle….it was so fast and happy it almost seemed like a huge hallucination. They reached out and high fived Raigen as they drove by and into the night…leaving as fast as they came. It was insane…and amazing. We all agreed it made our hearts so happy and that we totally have to be in that one day, ha.

 

Some other highlights from the short trip:

driving the juke from New York to Boston all alone! Craving nacho’s and going to Cactus and getting just what I was craving and then some…like watching our waitress swoon over my girlfriend *hissssss!!!* Went to China Town…it was so smelly and oh yea, the country just now ruled The Gay as legal…some folks still aren’t alright with our “mental disorder” but that’s alright, I still hope to one day spend my life savings going there for awhile! Watching Morgan tie a cherry stem in a knot..*squirms* Pushing E.T. down a huge hill in a Tonka truck and watching him go flying out as the truck rolled over in what almost appeared to be slow-motion, it was EPIC…Raigen freaked out….And watching Raigen’s world open that much further. Gosh that kid loves the North. No really, she named the mountains and really found herself. There were loads more like quick parent sex, glass cat walks across the streets, Raigen faking a heart attack from walking too much one night, Morgan’s landlord and Raigen’s bond, it was beautiful etc etc.

Our trip to Boston wasn’t long enough, soon we found ourselves packing up with out Morgan and heading back to New York. It was sad to leave, but at least we were leaving for New York and not Florida! The time between us would be short this time!