After my little breakdown yesterday, as I sat on the couch last night trying to explain to my husband why I was so sad, why it was one of my bad days, he reminded me that I was forgetting the piece of this puzzle that I have held on to from the beginning, one of the first things my doctor said to me. That even though the medical community is based on a platform of statistics, numbers, algorithms, percentages, and calculations because they have to be, I do not. I am not a number or a statistic. This is my story and as tragic and horrible and awful and unfair as some other people's stories are, as similar as they are to my own - those are not my stories. This is my story and right now my story is that I'm fine. I'm okay. I'm 39 and I'm a mom and a wife and I've been through some crappy stuff. I'm tired and I lose my patience and I try to figure out this mothering thing everyday, because really, if anyone knows the secret to one and three year old crazy I'd be willing to pay. I'm happy and weird and I like to sing loudly in my car...and at home. I'm super-sensitive and I cry easily at many many things. I do not take shit from anyone very easily and my 5'2" self has been known to scare things much larger. Cancer is part of my story, but I will not let it be my whole story. This is MY story - the story of one.
Thursday, March 6, 2014
Wednesday, March 5, 2014
It's reiterated over and over again that after this crap that you will have to figure out a "new normal", you will never be the person you were again...and that's true. So very very true. I will never again be who I was prior to approximately 2 pm on July 13, 2012. But then, isn't that true for everyone, at any life-changing juncture? I will also never be the girl I was in high school again, I will never be the girl I was in college, I will never be the person I was before I got married. I will never be the person I was before I had one child, nor will I be the person I was before I had two children. And that's okay. So much has changed and I'm okay with it for the most part.
What they don't tell you about this "new normal'? The your new normal will involve days of being terrified because your back hurts, even though your back has hurt in different places for the last 20 years. What they don't tell you is that even though both kids and your husband and you have been passing around some sort of cold/crud/allergy/sucky thing for a week now, the cough you have, that they all have, keeps you up at night wondering if it's something else. What they don't tell you is that you will stumble across someone's prayer request on facebook, read the story and have it be almost identical to yours - age, cancer while pregnant, left side, may instead of july 2012, triple negative- yet she is at home in hospice right now after stopping treatments last week because they weren't working for the mets in her brain, and you will spend your afternoon in uncontrollable tears, silently raging at God on Ash Wednesday. That is the new normal that I am not okay with.
Sunday, February 23, 2014
|"We ourselves feel that what we are doing is but a drop in the ocean. But the ocean would be less because of that missing drop." -Mother Theresa|
May we all have a joyful week ahead.
Thursday, February 20, 2014
I went through 12 years of Catholic school. I'm sure teachings on this have changed significantly over the years, but in first and second grades, we learned a lot about purgatory, the place between heaven and hell where you went if you weren't quite good enough to get straight into heaven, but certainly were not bad enough to go straight to H-E-L-L. Purgatory housed people who didn't have enough graces (I used to think of it like collecting enough skee ball tickets to get the big prize at Castle Park) or didn't say a perfect Act of Contrition before they died, or maybe you were a baby who had not been baptised and therefore had not committed any sin but had not been cleansed of Original Sin. Whatever the story, you were stuck in no-man's-land until enough people left behind prayed for your soul and you collected enough grace tickets to gain entry into heaven...or you just languished there forever.
The aftermath of cancer, after the treatment, at least in the beginning...that's like purgatory.
Heaven would be the rest of your life cancer-free, but of course no one knows if that will happen until, well, until they die without having a recurrance. So basically you still live your life in purgatory. I'm sure as the years go on without any problems purgatory transforms into a much more comfortable place. Don't get me wrong - after this crap, even in purgatory most of us are trying to dance more, laugh more, be a little more wild and at times reckless - and get all of the tickets that we can from the damn skee ball machine. Purgatory doesn't have to be boring, but it is at times...I don't know...heavy.
Because you know that at any moment the cancer bitch could come up and sucker punch you and steal all of your tickets because SHE wanted the 5000 point prize and the floor drops and down you go...and you find yourself in a doctor's office, being told that the scan doesn't look good.
When you join this craptastic club, unless you shut yourself off from everyone, which some days you really want to do, you will see loss. You will have a front seat to shitty outcomes for people you may never have even met in person but care about and cry for and hurt for. You will hear of a bad diagnosis, of mets, and the twisted black tiny portion of your mind that you are ashamed of but that is purely human and natural will sigh and think thank god that's not me. And you will cry silent tears while you are rocking your baby before bed. You will go and sob alone and undetected in the shower and you will dry your eyes and go read to your son before bedtime. And then you will spend the next week rehashing over and over again the thought that this could be you, at any time. But then you will get up and brush yourself off, and put on loud music and dance and sing and keep on swimming and live in purgatory.
In the past six months, in my small 120 or so person facebook group, we have lost one person, one person's mets have spread and the chemo is no longer working so well, one other person has had brain surgery and radiation due to mets and one was just diagnosed with mets today. I'm just angry. Angry that it's still a zero-sum game, angry that all too often someone gets sucker punched and robbed. I'm just angry.
Sunday, February 16, 2014
Thursday, February 6, 2014
22 Weeks and Cancer: Breast Cancer is not the "easy" cancer...: As the 4th was World Cancer Day and many cancer awareness campaigns are being done this month, a few ummm, interesting, ads have shown up.....
As the 4th was World Cancer Day and many cancer awareness campaigns are being done this month, a few ummm, interesting, ads have shown up...like this one from Pancreatic Cancer Action...
Well, hip hip hooray!! I didn't even know that I won the cancer competition when I was diagnosed, at 37, with Stage 3C cancer, while pregnant!! How silly I was to be concerned, because we all know that everyone with breast cancer lives! It's like having a cold!! Hooray for me!! Phew, I had no idea that I can relax now, without a care in the world for what might happen to me, because I GOT THE EASY CANCER!!
Excuse me for a minute but WHAT THE FUCK?? I wish I had breast cancer?? I understand, believe me I do, that pancreatic cancer is no joke and has a very high mortality rate. I completely get that. But maybe you'd like to talk to some of the girls in my facebook group, who are in their 40s and fighting stage 4 breast cancer. Maybe you should talk to the 32 year old mom of two littles that I went to the August retreat with, who is fighting stage 4. Maybe you should talk to me after my 4 rounds of chemo while pregnant and my resultant mastectomy and my 12 rounds of chemo after that and my 33 doses of radiation after that and my constant numbness and pain and tightness that I deal with every single day. Maybe you should talk to me after I dealt with the plastic surgeon who basically insinuated that I was probably going to have a recurrence any day now and really shouldn't bother to look into reconstruction right yet because really, I may not be here long enough to enjoy it.
How about I wish there was no cancer? How about no more deaths of any type of cancer? This is not some sick kind of competition, this is something that everyone should be in together. Because with crap like this, we all lose.
Friday, January 24, 2014
"Oh, Earth, you are too wonderful for anyone to realize you... Does anyone ever realize life while they live it...every, every minute? No, saints and poets maybe, they do some." - Wilder
I can guarantee to you that my husband...and Jack...and A-R if she could talk...and the rest of my family and friends would tell you that I am no saint. My high school creative writing teacher, Mrs. Roth, would tell you that I'm no poet. But with all respect to Mr. Wilder, although not a poetic addition (see, I know what's not poetic), I would add "and people who have or have faced life threatening illnesses or situations".
This crazy beautiful precious life is just funny. Life truly ain't nothing but a funny funny riddle. You spend your youth voraciously coveting additional candles, longing to be older, waiting for the day that your life will "begin!!" "When I'm older I will..." starts innumerable sentences. Somewhere in your 20's, you start feeling time accelerate - not only chronologically, but also across your face, parts of your body, your hair (in my case for sure, I've been going grey since my early 20s). What only years ago was a source of pride - "I'll be 16 six months before you!!" - becomes "Ha Ha, you'll always be six months older than me!" Your 30s come and eventually parts of you start creaking and cracking and you realize holy crap, somehow I've ended up precipitously close to middle age. The music you grew up with starts to be played on "retro" weekends and classic rock stations and the band members are receiving their AARP membership applications. You find yourself going to your 20 year high school reunion, which you can't really understand because you are certain that, even though you have been married for 11 years and have two children, you KNOW you only left college about 5 years ago. But if you are healthy, all of these thoughts are accompanied by the tiny voice in the back of your mind going "but I still have soooo many years ahead, no big deal." And then something comes and smacks you in the face so hard that a punch would feel like a cotton ball, turns your world so upside down that vertigo seems like a gentle ride on a small carousel, that everything you previously knew for certain, everything you knew to be true about this world, is intrinsically forever changed.
People who hide their ages, are ashamed of them...I just want to shake them and say "Why can't you see? Why can't you see how very very lucky you are? Those years are family you got to love and sunsets you experienced and places you traveled and children who were able to know you." But I understand. It's truly not something that you can ever comprehend until you live it and I get that. And I mean that - I have been on both sides now - even if you have taken care of someone who has passed, even if you have lost people around you, even if you have lost a piece of your heart when they left. I have lost many people in my life. I have lost people at a young age (both them and me), I have taken care of people that I have lost, I have taken care of someone who at one time held my heart, I have lost chunks of my heart, a rather large chunk of my heart- but I didn't fully understand - I didn't fully ingest, absorb, taste, consume the complete and utter fragility of this life until I got sick. I can see the theoretical thestrals. I wish to God I couldn't, I wish I thought the carriage was still invisibly guided, but I can see them.
So this is what a birthday means now.
It means that I had another year to practice at this crazy dance called marriage. It means that maybe to these two beings I will actually be a tangible mother, not a vague memory or scent conjured only by pictures or stories. It means I had another year to try and realize any, some, bits and pieces of my dreams and goals. It means that I have had another chance to continue in this powerful play, to contribute another verse.
It means that if someone says, "Oh, you'll always be older than me" I will smile and say, "Yep, isn't that great!?" It means if someone says, "Don't worry, you'll be there one day", that I will gleefully say "Yes, I will, and I can't wait!".
Never again will I lament the opportunities, the blessings that the passing of this time has given me. Never again will I fail to celebrate another candle, another 365 days, another 525,600 minutes.
Never again will I spend and waste time as if I had a million years.
I am 39 years old today.
I am 39 years old today.
Thursday, January 16, 2014
Ooooh, this blogging world...thine are but a tricky mistress...
A former co-worked posted a link on facebook today that a friend of her's had written. It was about vaccines - very anti-vaccine talking about the medical problems that her son had faced and alleging that it was all related to vaccines. I'm not going to repost it here and I'm not here to debate about vaccines...I happen to have no problem with them, my children are fully vaccinated, and that's my business. I'm not here to debate the medical validity of certain claims or whether people's beliefs are right or wrong. This lady certainly had the right to compose her post, recite her story, talk about what she believes caused all of this, etc. If that was where the story ended, then I wouldn't be writing right now. But her final sentence (and title of the post for that matter) is basically where the whole thing goes haywire - to paraphrase her, she contends that all children who have been vaccinated are injured, that all children who have been vaccinated have some sort of illness - ADHD, asthma, spectrum disorder, allergies, etc etc. - that are a direct result of vaccinations, even if their parents don't want to admit it.
I won't even go into the complete and utter fallacy and, what I perceive is delusion, of this statement. What I will say is that's where you lost me. Write about what you, personally, know, not what you think you know. I write about my experience, my cancer, my family. If I hear something from a friend, then I will write about that also, disclosing that it is the opinion of someone else. I enjoy reading other's blogs and their personal experiences, even, and sometimes especially, if they contradict my own opinions or experiences. How on earth can we hope to be convicted in our own beliefs if we do not try to understand the opposite viewpoint? What I do not enjoy is someone presuming to tell me what is going on in my body, in my family, in my personal world.
When you start writing about what you *think* you know, that's when credibility flies out of the window faster than pants off of Anthony Weiner in front of a phone. You turn into the people who troll cancer sites extolling the virtues of hemp oil as the cure-all - you turn into Todd Akin talking about a woman's body closing down production during a rape - you turn into someone who closely resembles a fanatic.
Wednesday, January 15, 2014
So sorry, I have been in the midst of a New Year cleaning dervish. I get these urges ever so often and I have to go with them, because if I didn't then my semi-hoarder-like tendencies would have us dealing with a 100% useless garage vs. the almost 50% useable one that I am currently working towards. Between that and the never-ending family issues (I am currently dealing with the impending preparation and sale of my grandparents house, amongst other things that I will address in the future) and the holidays and the plague that seems to have hit every single person I know, I have been a bit busy. But I press on and will check in a bit more in depth shortly!