5 years.

8/26 was the 5 year anniversary of my last chemotherapy treatment!

The following day I had my 6 month check in with my oncologist, where I was given the good news that I’m still dancing with my friend NED.

We also discussed some issues I’m having related to the Tamoxifen I take every day to hopefully keep the cancer at bay. We’re trying some options so that I can stay on it for another 5. Currently the standard of care is 5-10 years. She thinks that 10 won’t hurt unless these other side effects continue to cause me issues.

I honestly can’t effing believe it’s been 5 years. Time has just disappeared. I know that happens more and more as we age, but dang! And so much has happened, both splendid and horrific.

I’m really just relieved that I’ve made it this far, and hope that it never comes back. I’ve lost a lot of beautiful people to cancer, and because of my age and the particular way it decided to show up in my body, I am at an extremely high risk for recurrence. It’s something I try to not think about, and as time goes on, it’s easier. It is my biggest fear.

I have been surprised by the side effects and such that are still here, so many years out. Chemo really fucks you up. I’d do it again, but, this far on I’m still fatigued, have chemo brain, and my neuropathy pops up at the most inconvenient times. My eyebrows never really grew back and look funny. The hump on my back from steroids may never go away. My feet hurt 24/7. It damaged my teeth. I look at least 10 years older than I should. Losing weight is damn near impossible. My PTSD is overwhelming. My surgical scars are painful. My nerves in my chest are assholes. And my lymphedema is always giving me a hassle.

But, I’m still here. And I’m grateful.


Posted in Uncategorized by with no comments yet.

a shit ton

So!

 A shit-ton of shit has happened since my last entry. I mean, it seems like the universe is actively imploding in the vicinity of everyone i’ve ever met in my life, and scores that I’ve never had the distinction to meet. 2016 was a completely fucked up year, and 2017 is already giving it a run for it’s money.

As I sit here trying to get my thoughts straight after an enormously emotional day and too much of the good brownies, I am completely and selfishly focused on the depressive state I find myself in due to the intense sorrow that hangs over the lives of so many of those I care for today.

Every time I turn around, someone in my bundle of loves and extended peeps either gets some terrible news, or they are the terrible news. At 41, I didn’t expect this kind of regular occurrence for at least 15-20 more years. Between heart issues, cancer, and a few other choice health problems, I see that the health experts made an egregious mistake when they said millennials are going to be the first generation to die sooner than their parents in recorded history, or whatever. I think it is my generation. I know  personally 14 women my age who were diagnosed with breast cancer before 40, and have 3 online sisters that are actively losing the fight right at this very moment. I have several friends on heart meds already, 2 with stage 4 colon cancer, 6 with either type 1 or 2 diabetes, 4 with serious gastro issues, countless with various forms of arthritis, auto-immune disorders,  etc, etc, etc.  Our health record reads like those of 70 year olds. And worst of all, today,  a not close but very dear couple will be separated, as the husband will be taken off life support after major heart procedures and complications after. After a year long and very hard pressed battle, he will be released to change his place in this universe, and forever change the universes of his loved ones. My heart breaks for them. For everyone in my social circle right now.

Last year struck blow after blow. From the loss of favorite artists, again, most much too young to die from the things they died from, to the loss of American integrity, as a megalomaniac was falsely elected into the presidency of this nation. Top that with all the personal heartache everyone has dealt with, we are left battered and broken on the field, but we drag our bodies on, as hope slowly drains away.

Melodramatic? ya, a bit, but most people I know are feelin’ it. Even as we battle on. As we will continue to battle on, because there is no alternative. Giving up certainly is not an option. But damn, it hurts.

I remember listening to my Nanny & Papa talking about who was sick and who had died that week when I was a kid. I recall thinking that they lived such a strange life with everyone being sick and dying all the time. My child age brain just could not compute the way life worked. When you are young, and have a beautifully skewed view of how time functions and don’t understand the perspective of someone closer to the opposite end of that life graph, it just seems so terribly odd. Then all of a sudden, you are having those very same conversations with everyone you know and you are standing there going “WTF?”.

Where I’m going with all of this rambling is: Latent post-surgery blues combines with constant sorrowful news has me in a state of extreme sadness and reflection. Daniel’s death is making me take a harder look at my life and habits than my own health issues have ever done, and I am not sure entirely why.  Maybe too many of these shocks right in a row, while I am feeling not only unfit, but am having almost constant pain of some kind due to my surgeries and a change in my cancer treatment. I feel weak, feeble, unhealthy, and overly fragile. That also makes me terribly angry. Angry at myself, angry at the universe. Angry for my dear friends, and their families, because it is just so goddamn unfair that they are sick or someone they love is sick. That there isn’t a clear path to a cure for most of these things. That there isn’t a decent healthcare system in this fucked up country. That we have to have fundraisers so many of these people can get any kind of medical treatment to begin with. That their families have to worry about that. That big pharma and our elected officials gives zero fucks about all of us.

There need to be a lot of changes made going forward. In the way that I treat myself. In the way I treat my loved ones. In the way I engage in civic life. In the way this country runs. In the way humans treat each other and the rest of the planet. In the way I interact with the world around me. In the way we all connect with one another on a daily basis.

I think I am going to try to blog more to keep myself accountable for the changes I want to make. The first part of those changes is eliminating alcohol from my life, with exceptions for true vacations and really special events. So, please don’t think it is weird if I don’t indulge. I’m also going to take a walk every night, without exception, and continue all my PT at home for at least one year. I’ll take other steps towards improving my health as time goes on, but this is my start. I know I say this kind of thing all the time, but I am really rattled. And hopefully making regular updates here, even if no one reads them ever, will keep me focused enough.

I’d love to see each of you doing at least one thing to make yourself healthier, starting today. Could be anything from quitting smoking to not eating chicharrones anymore, or doing yoga at home for at least 30 minutes every day, or taking a walk. Would you be willing to make it public and share it? I want us to do everything we can to continue to be here for one another, sharing life’s joys. Will you commit to that? It really can be ANYTHING that improves your health.

I’ll get back to BC and will post a long one about my reconstruction in a couple of weeks, but I just had to get all of this out today before I had a complete breakdown.

Thanks for giving it a read, and remember, I love you and you are fantastic.

Posted in Uncategorized by with no comments yet.

Set phaser to 1

For anyone that actually reads this, sorry I’ve not posted in a while. Things have been hectic as we try to wrap up projects and get our house in order for my phase 1 DIEP reconstruction.

To say that I am in a panic might be an understatement. Being a procrastinator, I’ve of course let things drag on. I know I’ve got to get it done, but am easily overwhelmed by the 7 billion things that are on my list. I’ve prioritized, re-prioritized, re-re-prioritized, and re-re-re-re-re-re-re-re-re-re-re-prioritized more times than I can actually “re”call.  I’ve ended up in a sobbing pile on the bed just as many times, paralyzed by not only the number of “must-do’s”, but also the fact that this surgery is going to be very painful, might not work, might turn into some infected wound nightmare, might cause more problems with my LE,  or simply might not look good.

Add onto that the severe frustration and disappointment in myself for not losing a single inch or pound. I did a decent job working out at least 2-3 times a week, until I hurt myself, and then it went all to shit. My diet, I never got that under control, and though I am better at eating better food every day, I still love my sweets and beer. Add to that the fact that sometime between chemotherapy and tamoxifen, my thyroid is going kaput. yay. So, basically, anything I do won’t amount to shit anyway? Still have a few more appointments to figure that one out.

My natural reaction to empathize and help others is distracting me from my own projects/needs, and is draining me to the point of exhaustion. But I can’t ignore the needs of the people I care for! It isn’t possible for me. I don’t know how, I don’t want to know how. But we all seem to be having major shit happening at the same time. Like, there are 3 new babies, 5 surgeries, a few big house moves, a couple of car wrecks, some serious emotional upheavals, deaths in the family…. Is it just that we are middle aged and all of this is happening because it is just that time in our life?  Anyhow, that is why I am not asking for any help in preparation for this mess. You guys have your own shit to take care of.

What I wish more than anything right now is to be able to take a leave of absence before my surgery so that I can get my house in order as well as my head and my heart. My employer is wonderful, and I will get the time I need for recovery, but, businesses should also understand the “before” that is insanely hectic. If you are having major surgery, you should get 4 weeks off prior just to get your shit in order.

I’ve been taking breaks, going to see people and art and movies. Not sure if that is really helping, or just adding to the stress since it takes time from those chores.

Now, I have 21 days to get everything completed. EVERYTHING. And every one of those days also has work or a social engagement. So I really only have an average of 6 hours each of those days to get things done. 126 hours. I’m not sure if it will work, but I will try.

At this point, I’m experiencing, I guess, what manic-depressive people experience, but in cycles that are about an hour or less apart.  I wish I were exaggerating this. I wish I did not feel so ridiculous about it. Breathing exercises, stretching, thought diversion, none of it is helping.  At my wits end, so to speak. The cable of my lifeline is taut.

SO- if you are having anything happening in your life and I don’t respond right away, don’t think it is because I do not care. It may be that I saw it, and had a conversation with you in my head, and then remembered that as a real thing, or it may be that I saw, and was in the middle of a freakout and just forgot, or it may be that I saw, and just can’t respond at that time. Know that  I am thinking of you, and sending you love and all the good juju I can.  Know that once this is done with and I am a functioning person again, I will do everything possible to help you and be there for you.

I guess I’m just asking for understanding and forgiveness for not being as supportive to you as you might need me to be right now.

 

xoxo- j


Posted in Uncategorized by with no comments yet.

Oh my god, it’s a mirage! I’m tellin’ y’all it’s a sabotage!

Self-sabotage, that is.

 

Or is it, sab-a-taaage?

https://www.youtube.com/watch?v=nlOTRxt-dIw

 

Either way, I seem to be good at it.

I know that working out and eating right will make me healthy, and get this weight off me, but I continue to do the opposite. I’m in this ugly cycle of determination-fatigue-laziness-guilt-depression-determination-fatigue-laziness-guilt-depression and am having a really hard time breaking it.

I scheduled my reconstruction for August, so there is no time to waste, but that doesn’t seem to make a difference in the morning when I am exhausted and just need to sleep. And the kitchen is perpetually a disaster. I hate doing dishes so much. So I don’t cook, or if I do, it takes me forever to get the dishes done. I mean, I REAAAAAALLY hate washing dishes. I wish we had food replicators, or just some nutra-pudding that provided 100% of everything we need and nothing we don’t without having to think about it. Don’t get me wrong, I love food. But I would rather eat the same thing forever than have to think about what to make, and clean up after.

I suppose that is how prepackaged foods became the norm. The “atomic age” our country saw really changed the landscape of our eating habits in a ginormous way. I think the country was so fatigued after WW2, that food producers could have (and did) packaged up some seriously scary shit and sell it like crazy simply because it “took the work out of dinner.” Think about what your great grandparents, grandparents, and parents grew up eating. If you can, look at their cookbooks. The way everything was done changed dramatically. I find it really interesting, and I think that it accounts for a large part of our current cancer insanity.

 

Anyhow, back to my habits. They need to change. I’ve gotten a ton of amazing advice and knowledge from all over, and especially from my friend and trainer Colby (at Atlas Fit in Lakeway.)  He’s provided me with not only the skills to make my way around most of the equipment in the gym, but also the kitchen.

Now I just have to implement these skills into my every day. That is where the problem starts. As I sit here eating Ben & Jerry’s salted caramel ice cream, I don’t feel great about it. It isn’t just that I know it is not good for me, but I am not completely enjoying it. I feel driven to consume sweets, even when I don’t really want them. And even though I have fresh fruit and veggies in the fridge, I bypass them for junk. It is like I don’t have control over myself, and I’m really very angry about it. In every other vice, I can kick it to the curb in an instant. I quit smoking that way. Quit any recreational drugs, can give up beer without a second thought (well, maybe a fond thought for Fireman’s 4 would go through my head) but for the life of me, trying to make the right choice in the kitchen just defeats me. Then getting up in the morning to hit the gym? I look at the clock and fall right back to sleep, even when I have had 8 hours.  Part of that stems from the fact that getting to and from the gym is an hour each way in really shitty traffic. The other part is that I am just worn the fuck out all the time. Colby pointed out that stress is a factor in how you wake. I am sure my cortisol levels are through the roof 24/7. Between work, all the projects at home, cats & dogs, cancer, and everything else, my fight or flight response is always active.

I’ve got to change that, without stressing about it. AHAHAHAHAHAH!

Anyone ever see Catch 22? I feel like I am living in that movie sometimes.

So, to start this week off, Monday morning I will be heading into the gym, taking my kale and berry smoothie in hand, without fail. I’m out of time, out of excuses, and out of patience with myself over this shit. Tired of making jokes about how I ate the girl in my old photos. Tired of being tired all the time. Tired of being a slave to my sugar addiction. Tired of not fitting into all my favorite clothes. I know I will never be that 120lb slip of a girl again, but I can get to a reasonable weight if I work my ass off and hold myself accountable. Every pound of fat I carry increases my risk of recurrence and metastasis, and I don’t want that. I really don’t want to go through another cancer battle, as the second round is usually a losing one for breast cancer patients.  I have no interest in dying anytime soon, so if I can put it off at all, I will.

I am not sure how I will do it. It is a daunting task. Maybe if I just don’t think about it, it will make it easier. I won’t get overwhelmed and freak out. We’ll see. I’ve got till the end of March on my contract, then I will just be using the gym at work and will also start taking yoga somewhere local, to help with my stress and flexibility issues.

Lets see… that will be 4-5 hours of weight training weekly, 5-7 hours of flamenco dancing weekly, and 30-60 minutes a day doing yoga.

I better lose all this damn fat by the end of the year or I am going to be furious.

Wish me luck, and if you have any programs that you use to keep yourself motivated, please share them in the comments here! I love to hear how others keep themselves going!

xo- j

 

 

 


Posted in Uncategorized by with no comments yet.

2015- it was an odd year.

Ha! good one!

 

Ok so I am trying to stay positive, but odd numbered years seem to always be a little more difficult for me than even numbered ones. This has been true for as long as I can remember. Not to say that there are not exceptions, but, it just seems to be a pattern.  I know we humans search for patterns in order to make sense of the universe. Our brains work that way to help us navigate through life. I’m sure that is all my odd-numbered-year theory amounts to.

I haven’t posted much because to be honest, 2015 was a madhouse of everything. I had a hard time keeping myself above water. I would like to make an account of my year, for my own perspective.

I am gong to start this chronology with the bad, and end with all the good, so that there is a cleansing of the palette.

 

So here’s the bad:

John’s mom killed herself in January, leaving us all hurt and just a bit angry. Suicide is lame, even lamer when you don’t prepare your way. February found us packing up and sorting what was left of her life and property. That was hard. Then my first love, Leonard Nimoy died. Still not over that.

March found me signing up at a gym, and the rest of the year giving half an effort (at best) to get my shit together and get rid of this fat. May saw floods and power outages. June brought recurring nightmares of my 2 year chemo-versary and all the pain that came with it, as well as injured friends and some that moved away,   and a seriously messed up foot. July- Bitty ran off for several days and I was in tatters.

August was the start of some serious renovations, and all the setbacks and frustrations that come with that.  September was my last chance of seeing Motorhead, and Lemmy was too sick to play, and more friends moving away. It ended in the heartbreaking loss of my best boo, my sweet baby Blue.

October was more of a mess with the house, and in November I said goodbye to my oldest friend who died suddenly, and sat watching in horror as the body count in Paris and several other cities across the world rose. November was all stress and I missed my family more than ever.

Finally, December saw the passing of John’s grandfather and great aunt, another missing cat- Niku, and more time working and missing family. The year was full of injuries and LE flares, illness, and for too many, death (even some fictional that affected me.) So many of my favorite actors, musicians, and political figures passed away. I’m getting to that age where it will become much more common, and that in itself is hard to come to terms with.

 

But it wasn’t all terrible. In fact, some really amazing and fabulous things happened:

New Year’s Eve found me at a pajamajam party at the casa of the beautiful Nikki, where we all had a fabulous time. There was dancing and drinking and all kinds of merry-making. Brettany’s amazing Mad Hatter birthday party followed, which included lots of great costumes and a whole lotta Fireball. February we received so much love and support from everyone while working through Jan’s things, especially from John’s family and his bbf- Wes, and Cindy and her mom, and Lauren and Alyson for staying at our place while we were gone.

March was joyous as we celebrated friends nuptials. April started my magical musical tour this year with The Who, followed by a bff road trip in May to Kansas City, MO to see Beck and Willie Nelson where Erica and I rocked out, explored a beautiful city, and ran into old friends that we hadn’t seen in too long, completely out of the blue.  In June Brettany and I trekked to Dallas to see the Rolling Stones (aaaaamazing!) My nephew graduated from high school, I went to King Spa in Dallas with my friend Shanna- it was great.  For July, I received continuing good news of No Evidence (of cancer) Detected, I got to visit my parents, got some great advice about a business venture I am thinking about from Nicole, and got to finally see Faith No More. Bitty came home- quite scarred by his ordeal.

August was so hot, and it started with an afternoon in the park  with Erin and Jay enjoying the Austin Symphony, and ended with Def Leopard/Styx with John, my sister Deb and her husband Steve, Brettany, Kati, and Shanna-sooo much fun. September was hectic, but I jumped right in with an 80’s themed pool party (one of the best b-day parties i have ever been thanks to Cass,) a big screen showing of AKIRA, learning how to change out my rear wheel bearings, and more splashing with Brettany and Hall&Oats in Houston. Stephanie gave us free tickets to The Zombies in October, and I had an amazing time at my family reunion with my sis and everyone else, and then got to see Vintage Trouble with Toni. November was amazing as I went to Florida to officiate Susan and Brian’s wedding, enjoying the weekend with them, their family, Erica and Marvin, and met new friends. We went to Universal Studios, the Dali museum, and poked around Orlando. The super big thing though- John surprised me with an early b-day gift… of my dream car. A 1974 MGB GT. I almost died. Then we started on our living room floors, which have turned out beautifully.

December was crazy and amazing. My 40th was spent really celebrating. Steven and Jason came over from England, and the first few days Brettany, S&J, and I ran all over Austin doing some fun tourist stuff and then John joined us for going to a few movies during the Other Worlds Scifi Film Fest. Then we took off to Vegas! We stayed at the Flamingo! And Cindy joined us while we were there. We did so much walking- went to the Mob Museum, Neon Museum, Freemont St., shopping, Tiffany’s, gambled a bit, drank a bit, ate so much, and had a few adventures. Vegas is a weird place. I understand ‘Fear and Loathing’ so much better now.  Then we came back, went to Houston to NASA, wrapped up the season of Fat Bottom Cabaret, ate my favorite pizza, did a lot of shopping, and generally had a fabulous time. The crowning glory was of course, the new Star Wars, and another wonderful NYE with friends hosted by the still beautiful Nikki..  2015 was full of a lot of great b-day parties, Fat Bottom shows, movies, music, friends, home improvements, and surprises.

The thing is, our brains are wired for fight or flight. And that engrains negatives into our psyche more than the positives. So the lesson for me here is, to remind myself often of the positives, or the negatives will leave me desolate and drained.

 

2016 is going to be an even busier year, and I am planning my reconstruction as well. I’ve got several hurdles, the largest being my weight (still) and general physical fitness. Luckily, Colby is an amazing trainer, and though I have not followed his instructions well, I did learn a lot from him, and will be using it in full effect starting a week from today when I head back to the gym. I have cleared out the pantry and fridge, and when I get back to town, I will be stocking it with healthy foods, and no junk. My “cheats” will be few, because the only person I am cheating when I eat badly is myself. It really isn’t even about the way I look anymore. It is about my mortality and ability. It’s about having stamina and energy to make it through the day. I have to be the one to make my life what I want it to be.

And that brings me to my career. I am still working on figuring out what I want to be when I grow up. I’ve got to get that worked out, and soon, so I can get into school if I need to. I want to stay with the company I am working for ( I think) but I need to be doing something completely different there. Something where I feel a sense of accomplishment and value to the world.

That leads to my artistic endeavors. Currently my only outlet for creativity is the flamenco classes I am taking with the incomparable Olivia Chacon. I am still a beginner, and need to do more practicing, so don’t get much true expression yet, but I will. I love dancing, even if I am not good at it yet. But, I will be. I also have several paintings in my head, and will be learning some metal working skills.

Luckily, the floors in the living room are done, and I can start practicing in there without killing my knees. Which brings me to the house. Renovations are slow going, mostly due to my fatigue and depression. John has really been working hard. He’s got great skills with just about everything, and the floors are beautiful. Right now, we are working on the massive wall of shelving. He’s putting them together so I can stain them and then we can put a good coat of poly, and get them installed. I am soooo excited for this. After that is done, a   serious cleaning will happen, followed by decorating, decorating, decorating! and lighting installs, right after I finally get our bathroom and vanity area finished. There is a shit ton of stuff I need to do before my recon, but it is going to be so amazing to be able to relax after that in a home that I enjoy. A place that I am proud to have people come visit me in.

While I am mourning the huge loss of so many, and this year started with losing a hero of mine (in innumerable ways- another post will follow about all that) I am looking forward to the good changes that will be happening for me, and all the people I love. (oh Niku is finally home, so all 3 cats and 2 dogs are snoozing away regularly around us. yay!)  I will strive to stay positive, to be supportive of others, to do good in the world, make art, and to laugh and bring laughter to anyone I can.  I hope your 2016 is beautiful, and brings you joy, and I hope I can be a part of it.

 

xoxoxo- jeni.

 

 


Posted in Uncategorized by with no comments yet.

2 down, 60 to go.

Well. 5/14 is my 2 year dx anniversary. I was okay for a bit. I thought I could get through this “cancerversary” without too many tears. It has, however, really started to get to me, and I have shed quite a few tears the last 2 days. Some for the pain. Some for the loss. Some for the fear. Some for the friends that have lost their lives to cancer. Some for the friends that I have that will be dx’d in the future, or that are currently fighting for their lives. Every day since my dx has been filled with all of the above. I have days when I don’t cry, but not many. Last night and today has been a flood. I’ve been reflecting on everything that has happened, good and bad, over the last 2 years. Time is really flying by.

A big part of my tears is the extreme pain I am in. It feels like I have steel cables tied and twisted around my chest that are digging into my flesh all day long. It makes it hard to breathe at times. It tightens my neck, shoulders, and back.  It makes my workouts very hard. (but i am not giving up!)  This was set off by my wearing a post-mastectomy prosthetic bra, with these great things called Knitted Knockers. The actual KK’s are very comfortable. The bra was a torture device. It cut into my armpit and chest so bad, I was in tears by the end of the night. I wore it because my cousin’s wedding came around, and I procrastinated (as I do) so did not have time to fully alter the dress I bought to wear. There was no way to wear it without a filler, so, for the first time, I wore some foobs. It felt weird to begin with, as I have gotten used to not wearing prosthesis, and only wearing a scarf if I feel insecure. Lesson learned. My LE has been on full flare, and my nerves are exploding. It’s been 2 weeks. I am hoping it will ease off soon. I really do not want to have to take anything for it. I’m fighting so many side effects from so many things already.

I am also in the process of weening off of the effexor, which I stated taking to counter act the side effects of tamoxifen. I am not clinically depressed. I am situationally depressed. But the effexor makes me feel terrible, and causes even more brain fog and add than the chemo did. I can’t take it any longer. I would rather fight the hot flashes and night sweats. But this has probably made my anxiety and sadness more extreme than it would normally be, as the medical community actually calls this “side-effexor” as a joke, and you have to ween off of it very, very slowly, lest you go completely bonkers.

AAAND That has been eased by the portable a/c that my amazing boyfriend purchased for me. Cold air blows right on me all night. <3 so much love.  I can’t believe how wonderful he can be to me sometimes.

This year I am lucky enough to get to spend the 14th, and the entire weekend with my BFF. I am treating her to a show, in Kansas City, MO. We are driving up in the middle of tornado season, all the way through tornado alley. Looks like I have decided to give fate the middle finger this year. I am hoping that the weather stays calm though, as I reaaaaaally don’t feel like trying to duck and cover in the middle of nowhere. This trip will hopefully not only give me the chance to do some much needed bonding with my very best friend in the world, but will take me out of my routine enough to distract me. Plus- any time with this fantastic woman is a guarantee for a million laughs.

I am very thankful that I have had these last 2 years. I hope I get decades more. The numbers are not in my favor, so that can be hard to face, but I am trying very hard to improve my overall health. Colby at Atlas Fit is working really hard to teach me the skills I need to work out properly, and eat better. (food is my Achilles heel.) I am slowly eliminating the crap. It is so incredibly difficult. I do get motivation from seeing this one woman that goes to the gym. She, to me, is the epitome of fitness and beauty. When she is there, I can’t help but stare a little, because I want to be her so badly. She is just so effing FIT. She is my goal (though I will never be fortunate enough to have legs as long as hers)  She’s still super feminine, very girly, but with muscles like you would not believe. She’s inspiring.  And every time she is there, I remind myself that I can get there, and what I need to do.

And Colby, well, he’s just great. He stays on me, helps me, teaches me, and is so nice while torturing me. I highly recommend joining this gym, and signing up for training with anyone there. The equipment is amazing, the gym is so clean and really, beautiful. Also, small. So there are not a ton of Dude-Bro’s in there grunting and flexing at you all day.

Anyhow, I am also really missing my parents, and John’s mom. While I am lucky enough to still have my parents alive, and relatively well, they are so very far away. I want them to move closer so bad. Talking on the phone just isn’t as good as a hug.  And John’s mom, well, all we have to chat with is the box of her ashes that sits in our living room for now. I’ve done fairly well keeping my anger in check, and my grief, but it isn’t easy. I miss her so much. I miss her facebook posts, and her silly cards. I miss her funny photos and the odd things she would send us. I miss chatting with her weekly. Her pooch Raycie has integrated very well into our home, but she definitely misses her mom and being an only child.

Lots of feelings happening right now. A lot of changes, and a lot of work. I don’t feel like I have any control over anything at the moment. It’s hard, but I am learning that I need to learn to let go. That control is not something any of us have. That lesson may take a while.

Well, I raise a glass to you, my loves, who continue to support me, and love me. Who have your own issues and concerns, and keep going every day. Here is to 60 more years for us all of love, laughter, and being too stubborn to die.

I love you. Never forget that.


Posted in Uncategorized by with no comments yet.

The lesson I never seem to learn

It is ridiculous, really.

Over and over, life tells me the same story. I listen to it, think I absorb it, and continue on my merry way all the while preaching the lesson. I never learn it myself, though.

Today, I am left devastated, heartbroken, and utterly void. My first true love, the man that every other man has always been compared to, the perfection that was Leonard Nimoy, left us.

(For anyone that knows me, they know what kind of grief I am feeling right now. Thank you to those that reached out to me today.)

It may seem silly to you, but at the age of 4, I found the perfect man. The first movie I had ever seen on the big screen brought him into my life. I was blown away by everything that was presented to my eyes. The story, the concepts, the beauty, and – those eyebrows.  From that moment, my heart belonged to not only Spock, but the stars. I would gaze up to the sky and cry, knowing that  maybe, one day, I would get to go there.

Instead of following those dreams, I let the world beat me down. Over and over, I put the things that were really important to me on the back burner in favor of immediate and often fruitless tasks. My fear of failure, and the scars left on me from years of abuse at the hand of another child, destroyed my ability to make sound decisions about every aspect of my life.

I repeatedly decided to not try harder, not choose the right partner, not make the right decisions about work and school. I’m still making some of these mistakes daily. It is a habit, I suppose. It is one that leaves me full of regret and sorrow.

Instead of fighting for the piloting career I always wanted, I backed off when I was told that “women were not test pilots.” At that time, they weren’t. Instead of going to all those Star Trek conventions I wanted to go to, I let boyfriends waste my time. Instead of meeting the man of my dreams, I let things get in the way. I have filled my life with tchotchkes, trying to fill the hole that was left by disappointment at a young age. 

Shit, cancer didn’t even wake my ass up. Not really. I still find myself wasting time and money on things and tasks that have zero value to me in the long run.

What is wrong with me?  I am not sure. I know I will be hashing this out with my therapist for decades to come. What I do know is, I plan to work very hard to prioritize my life, my time, and my money, so that the people, experiences, and things that matter most to me are no longer set aside.

I’ll never get the chance to see Leonard Nimoy in person now. I waited too long to decide to purchase any of his signed art prints or other works.  I will remain full of regret and anger about that for a long time.

With any luck, and a lot of hard work, I will stop punishing myself and living in fear, and will start to actually live my genuine life. The one that brings me joy. And I will spend time with the people I love, and go meet and see the people who’s art I love.

Mr. Nimoy, thank you. Thank you for all your art, your kindness, your love of humanity. Thank you for opening my eyes to the universe, and my heart to all the wonderfully strange things that are out there. Thank you for allowing us to love you, in the wonderfully fanatic way that we do. Thank you for being amazing.

To myself, and the rest of you, I implore you to not wait. Go to that show. See that exhibit. Meet those people. Embrace your loved ones every chance you get. It is gone in a blink. Don’t cheat yourself. 

_\\//

 

 

 


Posted in Uncategorized by with no comments yet.

Walking On Broken Glass

Hello my friends. I am sorry it has been so long.

Life has been hectic, and while there has been much going on, there hasn’t been a ton to talk about. I had planned to start the new year with a  new post about all those happenings, and the fun and drudgery of my life from September to February, but I unfortunately have something to talk about that is very sad. It is also frustrating, enraging, and leaves me feeling useless and helpless, like millions of others that are in my same situation.

Yesterday, the woman who for all intents and purposes was my mother-in-law, successfully ended her own life. She was a wonderful, sweet, kind, caring mother, daughter, aunt, and friend. But she was in crisis, and was, in my opinion, released from medical care too soon and as a result, she is gone. She was so fearful and sad, that she felt she could not go on.

She was an intelligent woman, whose conversations were fun and engaging. Though her life was tinged with great sadness, I never knew how dark her path was. I feel very guilty for not doing more to help once this latest crisis came about, but know that her family was doing everything they could to lead her into the light, and get her proper care, and I was afraid of interfering with her care. I should have called. I should have texted, or written, or sent fucking smoke signals every day to let her know that I cared. I will forever regret not doing so.

If you, or anyone you know is feeling like ending your life, please, please, please, know that people care about you, and you are loved. Let those people know that they are loved, even if you think you might not be the person that should be letting them know. They need to hear it from everyone, and if it doesn’t help, at least you tried.

There are several professional resources available to those in crisis. Here are a few:

http://www.suicidepreventionlifeline.org    No matter what problems you are dealing with, we want to help you find a reason to keep living. By calling 1-800-273-TALK (8255) you’ll be connected to a skilled, trained counselor at a crisis center in your area,anytime 24/7.

http://www.helpguide.org/home-pages/suicide-prevention.htm

http://suicide.org

These are just a few places to find help.

 

 

For those left behind, there are some other organizations:

 

http://www.allianceofhope.org

http://www.sprc.org/sites/sprc.org/files/Survivors.pdf

http://www.didihirsch.org/survivors-after-suicide

 

I am not sure how we will get through this, but we will. We have to. We will do the best we can to honor her memory, and to hopefully help anyone else that might find themselves in the same place she did.

 

You matter. You are loved. You have value. You deserve to be happy, and can be.

 

Please take care of yourself.

(I love you, Jan.)

 

– j

 

 

 


Posted in Uncategorized by with no comments yet.

for posterior

I mean- posterity 🙂   I just want to include my letter to everyone from when I announced my diagnosis. I really wanted to take the edge off, and hope that it got a few laughs. :

 

 

My dear loved ones,

I have some not great news, and if you are not at home or at least somewhere private, please wait to read this until you are. If this is our work email- forward it to your home email. If you think you might want someone to be with you, please wait till you can be with them. I am not trying to be a dramatic fool here,  I just am trying to convey the fact that this is less than fun and kind of a big deal (for me at least.)

 

 

This is being sent to you because you are important to me and touched my life in a significant way, and I love you, and feel that you might want to know about what is happening in my life at the moment.

 

 

I hope you do not think email is too impersonal, but to deliver it individually to all of you would really be too hard for me at this moment. (My voice also goes up about 20 octaves when I am upset and you wouldn’t be able to understand a word anyway.)

 

 

Writing this out is hard enough, so I hope you will forgive me and know that I am not trying to bring you down and that I value you very much. I do hope this does not interfere with anything you’ve got going on right now. If it does, I am very sorry. The debate in my head to even tell anyone has been going on since I found out. At the same time I have an overwhelming desire to just scream it to everyone I encounter. I’m left literally walking in circles in my room trying to make up my mind.

 

Here we go…..

 

 

 

 

I noticed a lump in my right breast a couple of weeks ago after neglecting to do my self-exam for several months. Recent tests have shown that I have breast cancer. So far, this is what I know about it:

 

Today I met with my oncologist. (How is it even possible I have one of these!?)

 

It is invasive ductal carcinoma Stage 1, Grade 3, but the lymph node they tested was clear. The first lump is big- over an inch. The second on they saw on the contrast MRI is still waiting to be tested on May 30th as they could not find locate it clearly on the ultrasound to preform another biopsy. I am also still waiting on some blood work to find out some specifics about the cells and also waiting for my BRAC tests to come back.

 

Currently my treatment plan is that I will begin chemo on 6/3/13 and will have 2 kinds over the course of 16 weeks. After the blood work we are waiting for comes back and my MRI biopsy is complete, we can decide on my surgical plan and any radiation therapies.

 

I will be blogging about all of my experiences and thoughts during this time. (I am thinking of dubbing it “The adventures of the other Pancho and Lefty” what do you think?)

 

Please note that I do have a sailors’ tongue, and will not hold it. I also will be posting photos occasionally of things that may not be altogether that pretty.  If you are offended by seriously salty language, occasional bad grammar, and ugly photos of what is going to be happening to me or people making rude gestures, I am sorry, but that will be all over my blog. Once I set it up, if you are interested in following it, please let me know and I will share the link with you.

 

 

Due to my relatively young age and the suddenness and size of the growth, I must act very quickly. Over the next few months (or however long all this takes,) I will probably need some help here and there.

 

John is the most amazing man ever (even if he thinks it would be funny if we were to go as Cousin It and Uncle Fester for Halloween this year,) but he will need help too. Because I  will be taking time off from work, sometimes without pay, I really need him to focus on being able to work and advance his career so we can keep our home and the bills paid.   He also can’t wash a dish to my satisfaction to save his life. 🙂

 

With all of this coming, I will probably need a volunteer now and again to help me with things. If you would like to be a part of my support crew, please let me know and I will put you on a special email list. I know everyone has a lot going on in their own lives or you live far or just can’t, and I DO NOT want anyone to feel any pressure to help in any way. I understand completely if you can’t, and I want to make it clear that I know how far I live from everyone, and that it is not possible for some of you to get all the way up here anyway.

 

If you have any groovy or soft large scarves, or find any really fantastic vintage ones, feel free to send them my way since I will very soon be hairless. The more 60’s and 70’s the better. I will also be needing tabi socks to wear with my flip flops (cause you know how hard it is for me to wear a shoe) so if you see some good ones, grab them or let me know where they are so I can snag them. And if you see a sale on thick yoga or lounge pants in black- let me know asap- i wanna be comfy while I am slowly poisoned so they can save me life.

 

I don’t mind you sharing this information with your immediate circle but I ask that this not be shared with anyone that you know I would not want it shared with, or with friends of those people. While I am sharing it with you, and posting on the internet (and probably some things on facebook,) that blog will be kind of anonymous, and I just don’t need the negative energy some people bring to my life.

 

I am terrified at this time, but I am also really stubborn and intend to beat this. I have wasted a lot of time saying I will this thing later, or when I get thin again, and realize none of that matters. As the dear Sweet Brown says “Ain’t nobody got time for that!”

 

 

The thought of not being here to see my niece and nephew grow into adulthood, or seeing John’s hair slowly become even more like Professor Martyn Poliakoff‘s is unacceptable to me. I finally love my life and everyone in it, and I am not ready to leave it. I’ve been through too much other crap already, and I just won’t allow this to be what gets me. (Honestly, I am so pissed off right now.)

 

 

 

All that being said, the lesson you should all learn from this is

 

******** DO YOUR SELF EXAMS EVERY SINGLE MONTH.********

 

Make everyone you love do them every month. Do not miss one, ever. 

 

Breast cancer also occurs in men, so don’t think you don’t need to do them. Here is a great site: http://www.nationalbreastcancer.org/about-breast-cancer

 

This is the website that I signed up to get email reminders from, and still let it slip my mind. DON’T FOLLOW THAT EXAMPLE.

 

Men- make sure you are checking your bits every month too. And ladies- get into any OB/GYN service you can to get your insides checked. Colon cancer needs to be on everyone’s watch list. Don’t mess around or think it will be too uncomfortable. Cancer is more uncomfortable than having a camera where the sun don’t shine. Plus, they give you the good drugs when you get that done.

 

Also- quit smoking, eating garbage food, and abusing your body. All that raises your risk of various cancers. The saying “We all die of something” may be true, but wouldn’t you rather go later, after you see your kids turn into awesome people, and after you get to visit all the places and people you have ever wanted? I know I do.

 

http://www.breastcancer.org/ is a great site too. Try not to look at the articles with statistics though. They are not always good for moral.

 

http://www.letsfcancer.com/    is amazing.

 

 

I cannot express to you how much I care about each and every one of you. I may not see you very often for whatever reason, or maybe have not seen you in 20 years, but please know that I love and care for you and want you all to live long and healthy lives. So do what you need to do now to make sure you have that time. What ever it is that you want most out of your life, make it happen. Don’t wait to do X until you do _____ . Putting it off gets you no where, and then something like this happens and you are standing there with a dazed expression wondering what the eff you’ve been wasting your time on. No bueno.

 

OK- that’s all I got.  I love you. Take care of yourself.

 

 

xoxoxox

j

my official message to cancer via my brother in jazz, Howard Moon

photo live-ju-flip-off.gif


Posted in Uncategorized by with no comments yet.

“My bed feels larger than when I was small”

Sorry I have been out of touch lately. To be honest, things have been crazy and busy, and I have not had the energy to post, or even read a lot of things.

It all started with the loss of a very sweet woman from the BCO forums. She was wonderful. It hit me harder than I ever expected. Then I started working a ton of overtime trying to save up for my vacation, which was really wiping my energy out. I had been doing my workouts and eating better, only to have my LE flare up big time, and I only lost 4 freaking pounds after 2 months of major changes. I mean- i cut my sugar/carb intake by about 95%.  For anyone else, that would have dropped 20lbs. But not me! I am the girl who gains weight when I get a stomach bug. I had a friend in another state get in a terrible accident, so was worried sick about him and set up a donation page to help with his bills since he can’t work. Please donate! https://www.youcaring.com/HBHez   And last, I helped decorate for a good friend’s amazing bachelorette  party this past Saturday. All that on top of us hitting our hottest part of the year, the house being a disaster in every way and I just want to scream and cry all day because of it. Which brings us to my current state: dumpsville.

I’ve been struggling so hard with my body image. I’m not winning. I feel like nothing I do makes a difference, and seeing all my gorgeous friends, with beautiful and whole bodies, just murdered me. I was having a great time, except, I was so aware of my body, and all of theirs. Maybe it would not be so bad if my face didn’t also look so strange now. And I don’t like to bring up my health, but I feel the need to explain why I look so weird and have divots in my chest where there should be breasts. Like I have to excuse the horror of my appearance. Fat, with crazy hair, bad skin, a weird face, and holes in my chest.  Will I ever had a body I can be happy with again? How long will it take me to get there? a year, 2? 10? Will I even live long enough to see my real body again? I certainly am not going to be wearing the dress I bought for Steven and Jason’s wedding. I feel foolish that I thought I would loose 60 pounds by now.  I am going to keep trying, but, I already feel defeated. The Tamoxifen is making it even harder for me, and my PCOS is what caused this weight gain to begin with. I’m so frustrated and sad. I feel like a gorgon. It doesn’t help that I am in pain pretty much all the time. I know that affects my mood.  Is there any point in my even trying? Sigh. Maybe once the weather starts to cool down a bit my mood will improve.

If I had a pool, I know that I would be in a better mood! But apparently, that isn’t something that will happen in this house. I can’t even get an above ground to use because someone doesn’t like them. Major projects around the house? I get over ruled time and time again.  Another place that I feel useless. It would do me so much good to get in the water every day- great exercise and the water pressure helps with my LE.. But hey- planting trees right where i wanted it is more important!, Right?

There is more of my foul mood.

If i snap at you or am morose when I see you, just know it may pass soon and has nothing to do with you, it really is just me.

 

xoxoxo

 


Posted in Uncategorized by with no comments yet.

‹ Older Posts