A whole new road

As so often happens, the relatively smooth road that we had been traveling, that we had fought so hard to get back on, developed an enormous sinkhole. We are on a whole new road.

We made our move to Utah in August, a move that we had wanted to do and had been planning forever. A few months after we got here I noticed a small lump in my neck, near the place where I had a positive node in 2012, but not exactly the same spot. I went to urgent care, not having a Dr.  here yet, and she found that I had quite a few swollen glands due to some strong congestion (not uncommon in the mountains and high altitude). I watched the bump obsessively and it didn't get larger, actually reduced slightly. We got on with our new life, exploring our new surrounds, Jack starting kindergarten, getting the house in order. Sometime in late October I noticed that I wasn't able to eat as much as I used to but didn't pay a lot of attention to it. In mid November some stomach and kidney pain developed which sent me to a GP, who tested for H pylori and a few other things. But one night the pain got so bad that it sent me to the ER and it's there that the sinkhole developed. After a rather distressing CT scan and ultrasound were done, I found myself being transferred by ambulance to the cancer center in Salt Lake. I had what you could say was a pretty explosive recurrence of cancer, and I was now a Stage 4 breast cancer patient.

What does Stage 4 mean - because I know many people, sometimes even people who have had cancer, don't understand what it means. Stage 4 means I, as of right now, am treatable but not curable. I will be in some sort of treatment for as long as I live. There will not be a time, more than likely, when treatment is over. The numbers are not good. There are people who live 10-20 years with Stage 4, but that's not the norm.

So where does that leave me now? Three and half months later this is what reality is. I'm going into my 14th round of chemo. I had a scan in late January which showed either complete resolution of tumors or significant shrinkage of tumors, which is great news, but in Stage 4 land you take everything with a grain of salt because that all could change on a dime. I am responding very well to treatment right now but I feel like shit a lot of the time. I have almost no energy but I'm trying to get it back. This is nothing like last time where I had almost zero side effects and was able to take care of the kids and myself  95% of the time. To be honest, I have started writing letters to my children, I have outlined parts of my funeral. But I am also working very hard to just start talking it day by day, to look at things with a more positive mind set - that I AM responding well right now and maybe that will continue, to be like that one lady who "turned 18 months into 18 years". It's not something she did, it's just something that happened, so I'm trying hard to believe that could be a possibility.

How do you face this when you're 41, when you have a 5.5 yr old and a 3 yr old? I'm still not sure. I remind myself every single day that everyone alive has a terminal condition - life- and that no one, anywhere, is protected from anything.

Due to my diagnosis, and the amount of treatment I need, we will be moving back to California this month. As beautiful as it is up here and as much as we love our house, it's hard to be sick up in the mountains, when your hospital is 25-45 minutes away depending on the weather. Again, one step, one day at a time on this new road.

40

I turn 40 tomorrow. One of those milestone ages that seem about as close as the moon when you are younger. I turn 40...I GET to turn 40.

I turn around and have no idea and every knowledge of how I got here. 40 years of memories, some so clear I can see them as if a movie reel in my head. My life is nowhere near what I imagined it would be at 40, but then, is almost anyone's?

I shed tears tonight...not because I'm turning 40 (I want to shake...throttle the people who bemoan birthdays, who hole up in their rooms and rage against the extra candle) but because I want to turn 41, and 42 and 45 and 55 and 65 and 75. You start to feel greedy asking for years, asking for time that so many give not a second thought to, that most expect.

I still don't know many things. But I do know that even on days when I lose my shit, sometimes on the very days I least deserve it, my smart beautiful son tells me I'm the best mama in the world. I know that every day I watch this little sweet stunning girl who fought inside of me, grow and talk beyond her short years. I know that I am lucky in the spouse department...that I have a husband who never waivered for me, who was as blindsided as I by the past two years yet has never once winced or blinked at the baldness, the scars, the uncertainty. I know that I try...to be a better mama and wife, to really appreciate the fact that my days with them are a gift to me.

I know that this year my word is Brave...I need to be brave, to take chances, to not be afraid of what could or could not happen.

I know that I have lost way too many people - people who didn't get to turn 40. I know that they will never ever be forgotten to me.

I know that I need to give myself grace, to know that I can't humanly ingest every day and moment like I should - that even after all of this crap I'm still human and nowhere near a saint or a poet.

I know that this body with its trail of scars and Frankenstein-assembly that I never could have anticipated or imagined is mine. It still, for the most part, works. I am lucky.

I know that I still do not love this curly hair that I've been left with, with the grey that's been growing since I was 20...but I appreciate it every day.

I know that while I have been unlucky in certain aspects, I have been very lucky with many more.

I know that I will take any candle I am blessed to get. And I want more.

Holy end of the year....

wow, I cannot believe it's been that long since I have posted. I just wanted to check in and I will sit down tomorrow and get some thoughts down:) Hope you all are well!

Just keep swimming...

I wore a bathing suit today. In public. In front of strangers.

I wore a bathing suit even though nothing except a modest wear suit would cover the scar rainbowing across the left side of my chest...even though nothing covers the severely puckered skin near the center of my chest where my skin just didn't heal right.

I wore a bathing suit even though I felt like every eye was on me, and not for the reasons they were on me in my 20's.

I wore a bathing suit because my husband was so excited to tell me yesterday that a spot opened up at the community club.

I wore a bathing suit because it's been unbearably hot here for over a week with not much relief in sight and we now had access to a pool.

I wore a bathing suit because my son said "Mama, will you please go to the pool with us?"

I wore a bathing suit because I got to play with my son in the water for over an hour..and no one pointed at me or stared overtly. (some kids were a bit confused when they saw the scars though, but that's okay)

I wore a bathing suit because I was able to stretch out my still nowhere near fully mobile arm and it didn't hurt.

I wore a bathing suit because I want my daughter to always know it's okay to look however you are going to look and I want my son to know that a woman's worth is not in how perfect she looks.

I wore a bathing suit because I'm here, and able to, and I don't even forget that.

My friend.

My friend died last night.

 

That's really the weight of it. She died. She was here, we talked almost every day for a year and a half. She disappeared from all of us about a month ago, shut off communication at the news of stage 4, went into the hospital this past weekend and is now gone.

 

We sat in a virtual waiting room yesterday, waiting for news, sharing pictures, stories, laughing, crying...many of us strangers to each other, but connected by this one person. Holding hands and passing tissues and clinking glasses in salute over hundreds or thousands of miles. It was...surreal.

 

How do you mourn someone you've never physically met but were closer to than some people you've known for years? How do you forgive someone for shutting you (and most everyone else) out in the last month even though you completely 100% understand why? How do you forgive someone for leaving you when they were not supposed to, when you were both, having such very similar circumstances, supposed to beat this together?

 

I make friends neither quickly nor easily. Now I have one less here with me.

 

Sue was the inspiration behind this blog post. I ask that in her honor, you take a trip, you laugh a little louder, you try a different food, you celebrate this Halloween in an especially big way, you live a little bigger, and you make a friend out of a stranger. This is for Sue.

How Facebook has changed the process of birth and death...

Pre-cancer, I was never one to shy away from death. I wouldn't necessarily say I was morbid, but I wasn't afraid either, at least not of the concept. In another life, I think I would have loved to be some sort of forensic scientist, among many other things. I went to my first funeral when I was four, when my great Pop-Pop, whom I loved dearly, died at 92. Then again the next year when my nana died, and so on and so forth. Needless to say, I've been to many funerals over the years and am quite shocked that there seem to be many people like my husband who had been to only one funeral in his entire life before my uncle's 9 years ago. I've taken care of some severely sick people, and watched a few people close to transitioning.

 

The beginning of this post has been sitting for months. I've come back to it often but just haven't been able to attempt it. But now it seems more appropriate then ever because of the juxtaposition of the last few days.

Last night my sister-in-law posted that my niece was in labor. I woke up this morning to pictures of a beautiful healthy new baby. This is, as most would agree I'm sure, pretty much the norm these days. What you used to hear on the phone after the fact, maybe even passed through a telephone tree or god forbid, in person, is now transported in a matter of seconds with shares and likes and comments. And who doesn't want to see a new baby, know that everything went fine?

But I also woke up to a horrible, heart-wrenching post.

I have a good fb friend, one of the girls in my group. We are the same age (ok, she would emphasize that she's a year younger), we were diagnosed around the same time, same stage, same surgery, almost same treatment plan...same same same. Same smart-assedness. We would often message each other, check in on each other, commiserate and snarkily comment on the bounty of stupidity in the world...her cancer was slightly different and made a reappearance shortly after she was done with radiation, around the same time I was. We got burned together, across country from each other. She started back up on a different chemo, and get this - didn't tell her mother or her boyfriend because she didn't want to upset them. So she's been on chemo for the past year now and we were chatting the day she got her scan results back...everything was clear. Sooo happy. A couple days later I realized I hadn't heard from her and started messaging her. This went on until I asked a fellow group member if she had heard from her - she had not. After some digging we discovered she was in the hospital "having many tests done but would get back to us soon". This week we found out that she had a stroke and had mets to her spinal fluid. The doctors had given her a year. I was devastated. We kept it quiet, from our group, because we knew that's what she was requesting. Early last week, my husband found out the guy he has golfed with every week for the past 7 years or so has terminal kidney cancer. Then Robin Williams died, which was a communal sadness. Then I found out about my friend. Last week was not good.

As I said, I was devastated, and was planning something Halloween themed to send her, as we both also share a strong love of the holiday. This morning, after seeing the new baby, I saw this post - "...is in the hospital in critical condition, unresponsive, intubated, seizure activity..." I'm angry. I'm angry and sad and heartbroken. Some of her friends started a private fb page tonight so people could finally be updated on what's going on, for all intents and purposes it is a virtual waiting room, and 21st century parlour. But instead of what used to be immediate family, or close (at least in proximity) neighbors and friends, everyone who has an internet connection can "watch" someone pass. This is not the first time, I've seen it often. I've seen people, even spouses, give status updates of those dying.  I have been, at least tangentially, privy to the passing of people I don't even know. I still am unsure how I feel about this, it's something difficult to process.  I do know that I am sad. I know that I will pray, which she probably would not appreciate. I know that I will "watch", from 3000 miles away, a friend pass way way too soon. I know that no matter how technology has changed the way in which we receive or share information, it will in no way change the feeling of joy at seeing a new life or feeling of your heart breaking.  

Some observations in light of the Robin Williams tragedy

I, like 99.8% of the population, am so saddened, heartbroken, and upset by the suicide of Robin Williams yesterday. I can't say I'm shocked, knowing the man has fought demons for years, but wholeheartedly saddened nonetheless. As I have stated before, my getting sick has given me a huge empathy (and yes, I emphasize empathy, not sympathy - I can directly relate to dealing with a life-threatening disease) that those who have not gone through this can never have. That I did not have before. Admittedly, before I got sick, I may have sympathized with those who suffered mental illness/depression, but I honestly didn't comprehend the magnitude. I do now.

What I've noticed, though, in many of the articles I've read, is something akin to this sentence used often when talking about mental illness - "People chastise and attack people with mental illness. You would never attack someone with an illness like cancer." The sad thing is, we do get attacked. People attack and chastise people with cancer ALL THE TIME. Even if your friends or family don't speak it to your face, there are thoughts of "what you could have done differently, what you could have done to prevent it...I do this, this and this and this is why I DON'T HAVE IT AND YOU DO." Have you ever looked at the comment board on any cancer site, or worse yet, a "natural" healing site? Did you know that all you had to do to avoid cancer was - be vegan, be vegetarian, run 5 miles a day, take cannabis oil, drink goji juice, dance under the moonlight, have been raised in a hyperbaric chamber, eat meat, don't eat meat, be a man, be a woman, meditate hourly, not smoked that cigarette in your 20s, had children early, not had children early enough, not had children at all, eaten organic since birth, been breastfed for 5 years, and eat almonds? Did you know that if you have cancer all you have to do to cure it is take cannabis oil, go to the rainforest naked, don't eat sugar, meditate hourly while eating almonds, drink goji juice and think good thoughts? Did you know that it was your fault for getting a mammogram, not getting a mammogram, not having acupuncture, not using coconut oil?

In fact, you're even told some of the same things as people fighting depression and mental illness - stop using this for attention, be thankful for what you have, be happy you're alive, other people have it worse, what do you have to feel sad about, stop complaining, get over it.

This is what you go through, what you read when you are fighting a disease, when you are fighting cancer. So yes, people with cancer get attacked all the time for having an illness. How about we stop attacking anyone when you haven't walked in their shoes. Period.

 RIP Captain. I'm so so very sorry for what you endured. The world is a dimmer place for you leaving. May flights of angels sing thee to thy rest.

Teachable moments...

Last weekend we went to the county fair. Almost immediately upon walking in and into the barn area, while looking at the Watusi cow (have you seen one? They are awesome!) a little girl in a wheelchair rolled up next to us. Jack loudly asked (because he's 4 and the only volumes a 4 year old knows are loud, louder and whispering so quietly that I can't hear) "What is that wheelchair for?" At first I cringed a little inside, as I know most parents do, and then I took a breath and said "Baby, she hurt her leg so she needs help to get around" and that was that.

 

But as I thought about it, I'm glad he asked and I'm glad I responded. Because then I started to remember two summers ago...when I had no hair and was pregnant out to there. And people stared and looked away and ignored me. I would have been happy if some kid asked why I didn't have any hair, and their parent took the time to explain it to them, or even told them "I don't know baby, why don't you ask the lady yourself?" An honest question asked and answered, no matter how uncomfortable the parties are, is a million times better than a silent stare.

 

Jack knows that I have scars all over... I haven't hidden them from him because I wanted him to know mama has ouchies, but they are healing and will eventually get better. He knows that mama has been "sick" before. I don't want him or AR to ever be afraid to ask about people's differences but I also want them to understand that those differences are completely okay, that everyone has their own scars, their own abilities, their own normal.

 

 

My side venture...sanity helper...same diff...

I have so many things waiting to be written but it's just so hard to sit down and write lately. Partially because it's slightly uncomfortable, partly because some of the things I want to write about are difficult to get out, and partly because even though I am still under restrictions and have help with the kids I'm still trying to do too many things in a day. And here is one of them.

 

This is probably a shameless plug but whatever, it's my blog. :) Even before I was laid off a few years ago I liked to do crafty things. Jack's birthday and the holidays offered limited opportunities. Then I was laid off, then pregnant, then diagnosed and my time was consumed by a new baby, and more doctor's appointments and procedures then many people can even imagine. So when I was done with active treatment, when AR was a little older and more independent (which is the ONLY thing she is these days, highly independent, you'd think the kid is 21 years old and not 21 months old!), I started to look for a small something to fill my time with again.

My Mickey Mouse Clubhouse Birthday post has remained pretty popular on pinterest, and I love to do certain crafty things, so I started up Moose Country Crafts to provide me with something to do! I love to make rustic, simple things so if you want to take a look, that would be awesome. You can also always follow me on Facebook, or on Instagram @moosecountrycrafts and twitter @moosecntrycrfts.

 

the house

Sorry it's been so long, I promise to update on the whole surgery process. I've been a little slow lately...recovery is not quite as bad as I anticipated but it's still frustrating and slow...as it should be for such a large, long operation.

But this is where my thoughts lie today. I believe I have mentioned before that I have been in the process of cleaning out my grandparents' house over the past couple years. And that if you have ever been responsible for such a thing you understand why it takes such a very long time. Anyway, while involved in this process, I've not had much time for feelings about it, other than getting it done. I've had a baby, had cancer, a bunch of "life" has happened while I've been in this process. And frankly, there were such bad feelings around the house in the last few years - my grandfather's dementia, having to evict my uncle and the preceding and following strife around that whole debacle, my grandmother's decline, the increasing deterioration of the house - that frankly, I just wanted it over with, done and gone.

 

But now that it is done, now that the papers are signed to put it up for sale, now that I looked on realtor.com this morning and saw it listed...now it's real and now I feel it. And now, like I suspected would happen all along but didn't want to admit, now it breaks.my.heart.

It's the place that raised three kids and many animals over the past 64 years.

Adding on to the original 2/1 house.

My mom and uncles

 

It's the place that when I had dreams when I was little and they took place "at home", that's where they were, not in the crappy apartment where I lived.

My first Easter Sunday with my grandparents

 

It's the place where I spent the majority of my childhood, where 90% of my childhood memories live, where my name is still carved in the cement of the driveway, on a small square between the sidewalk and a dilapidated fence built by my pop pops hands.

JLC 1983

It's the place where I could walk to the next block over and go to the house in which my grandfather was born, where my aunt (his unanticipated twin) was placed in the warming oven of the stove because she was so small.

Some unknown holiday dinner

 

Halloween circa '84?

It's the place where I learned to roller skate down the sidewalk, and almost lost control of my bike going down the steep hill at the top of the street, it's the place where I learned about crushes on boys (my friend had a crush on one of the neighbors grandsons - I still thought boys were icky and had no idea why she would do that...funny enough, that boy and I are still acquaintances)

 

It's the house in front of which most of my "milestone" pictures were taken - baptism, holidays, graduations...

Christmas of some unknown year

Baptism

 

It's the house in which my grandfather built all of the kitchen cabinets, which will likely be torn out and tossed away.

 

It's the backyard where all of my childhood pets are buried.

The graveyard resides in the back left corner



Suburbs anyone?

It's the shed where I spent hours upon hours watching my uncle (not the one we evicted) work on his motorcycles, sitting on them, pretending I was flying down the highway.

 



Mom getting ready for a dance

It's the house where my uncle tried to teach me to ride a small motorcycle, where I took the corner down the driveway a bit too fast one day and dropped the bike (going all of what, 10 miles an hour?), where my mom freaked out, scared me and I subsequently never rode a bike again.

The motorcycle riding uncle, 1969

Random card game

My grandmother

 












It's the street down which my uncle tried to teach me to drive a stick (didn't work, had to learn it on my own, on the rainiest day of the year).

 



My uncle with Arlo

It's the backyard where I helped my pop pop garden, plant, build, create.
 



My pop pop's work shed

It's the back bedroom where I had my first kiss the summer after 8th grade.

It was the house where on a Saturday morning when I was 5, I learned what loving your animal until the end meant when our dog Arlo was taken to be put to sleep, with my mom and uncle crying all the way there and back.

 

Arlo and Horatio

It's the house where so many of my cousins, aunts, uncles, etc. visited over the years, when so many of the other family houses had dissipated.



One of the few times in the past 25 years my grandmother allowed the fireplace lit

It's the place where, in the living room, my grandfather took his last breath less than 500 feet away from where he took his first one.


 

My grandparents

 

It's the house in which, while cleaning it out, I am 100% certain that there were multiple times in which my grandfather and uncle made their presence quite known and scared the bejeezus out of me.

It's the place that when you're driving around the neighborhood after being away for many, many years, taking the back way out of the shopping center, and you don't really remember the right way to go but your steering wheel just follows what your hands do, which are turning without thinking, and you feel the way back that you've taken a million times before, that you apparently could truly do with your eyes closed.

 

For all intents and purposes, whether I wanted it to be or not, it was my touchstone. I will likely go back up to the house one or two more times and once, for certain, I will sit in the living room, by myself, and cry. And say goodbye.