Never the Same

I've had conversations about death all my life. When your mom dies when you are young, you get used to talking about it. You also get used to people's odd, uncomfortable, sometimes weird responses to it. If you haven't experienced a lot of loss in your life, or if you just are uncomfortable talking about death, allow me to share my two cents with you. It's never the same. 

Years ago at a family function amidst tears and laughter one of my uncles was recounting stories of his two sisters (who have both passed) and how much he missed them. My cousin and I who both lost our mothers way to early were soaking up every word, he knew these women in a way we never would. As much as he lost he kept saying but I didn't grow up without a mother. His pain was different. He lost two sisters in two years but by this point they were all grown and raising families of their own. There was immense loss, but his day to day was not impacted the same as my homes, or my cousins. We all lost the same two women, but it's not the same.

My cousin story of losing her mother suddenly to a car accident was not the same as mine when I lost a mother after years of battling a brain tumor. She previously had been raised by a single mother and in an instant was being raised by a single grandmother. A women who was still grieving the loss of her daughters now also had to raise a child she never intended to raise. There was immense love but it was not her mothers love. My father had known his fate for years, he had moved his parents in to our home to help with the day to day years before. There was also immense loss and love in my home, but it came with years of built up support and anticipatory work. It's not the same. We both lost our moms, but it's not the same.

Last year a girlfriend of mine lost her husband, she has been a incredible support and shoulder to me. She has given me advice no one who hasn't lost a spouse would know to give. She has allowed me to speak freely about the pain as well as the relief, she has held space for the fucked up with out judgment or advice. Our stories are not similar, we had years to prepare, she had not even a moment. Either way we both are now raising two teenagers as single mothers and we both are now foraging forward with dreams we created with a partner alone. We both know the pain of sleeping (or not sleeping) alone. We both watched our children break as we told them their father's are no longer here, it's a terrible club I hope you never join but even with her, it's not the same.

No matter how good we may appear to you after a loss all our lives are a mess, and no one can understand it.  Not to say the camaraderie of someone who understands you isn't amazing, the story and the feelings are always unique. Death is a part of life, and we are all doing our best but please know we are not the same. 

Our last Christmas together

Our 1st vacation without Jeremy

Doing my best to get by, 

Liz

Uncertain times

If you live on this planet I'm sure you are aware of the state of craziness that is happening right now. I know it may all seem extreme, but let me say thank you for doing your part from the small percentage of people you are trying to save right now. From everything I've read and understand (Not an expert on any level) my home is looking at a while before we get to socialize again. I've never felt the need to expressly say it here before but I am an extrovert, a big one!!! The knowledge that I'm not sure when I will see my friends again, when I will get to return to work, or even when I will get to grocery shop for myself again is overwhelming to say the least. What isn't overwhelming is the opportunity to see the world and my community shine. People are showing up for each other and that makes me so happy!!

I thought I'd take a moment to share how my house is showing up for others and for ourselves this week. This isn't a competition or a show of how great we are doing, believe me there has been a lot of screen time, this is just ideas to help you see what still can be done to feel like a community even when you feel so alone. Also as a reminder, my home is immunocompromised so while sharing things I've prepared here in my crazy sterilized home feels safe to me, I wouldn't recommend sharing anything with someone or a home you know to be immunocompromised.

So where did we begin?? Earlier this week Oliver and I searched YouTube and found a video that walks you through a painting class. We sat together and painted side by side, pausing the video and rewatching parts that confused us. We both wish our paintings had been better but the experience was pretty neat. Sawyer was interested in painting at a different level! He has been asking to paint his bedroom for awhile now but life keeps us busy and it hasn't been high on the priorities list, but guess what...we got nothing but time now! So we researched colors online, called the paint store and placed our order over the phone, did a speedy pick up and now are taking the bedroom painting a day (or a wall) at a time.

Not gonna lie, I felt good about all of that, and then I remembered I had days, weeks possibly months of this and I wanted to cry. Eventually I remembered that I had already kind of done this once before. When my boys were little Jeremy was sick and for a while I felt like and sometimes even was a single mom. To cope I would set out an activity every night before going to bed so that when they woke up they had something to do while I guzzled coffee, started a load of laundry or did whatever needed to be done. This helped all of us survive that rocky time in our lives. So I went old school and I made playdough! I set it out and every one in the house has played with it! It's been so fun! When I made it I made extra and we went for a walk around our neighborhood and left surprise bags of playdough with an anonymous note for our friends with young kids in the neighborhood. The boys loved doorbell ditching friends so it was a game as well as a little exercise and it made us all not feel quite so alone.

The last thing I'm going to share has been sooo easy and yet silly and fun. I know that with the quarantine a lot of families are taking walks around their neighborhoods, I mean we all need some exercise right? So the boys and I put up a bright sign that says "JOKE OF THE DAY" and everyday we are putting a new joke up for the walkers to see. Today's funny: Ducks have feathers to cover their butt quacks. ;) Funny right?!? Hopefully it brings someone a smile today.

Anyhow there has definitely been more home cooking, more puzzles, more walks together as well as more xbox, more tv and less showers all of which I'm making peace with. I know I feel very alone right now, but I also feel so grateful that my community is banding together to keep my family safe. You may feel it's all extreme or unnecessary so if you need a face to remind you why you are doing this let me present exhibit A: 

Still mostly sane,
Liz

Closing out 2019

Since the holiday craziness is finally behind us, I guess I can officially procrastinate no longer. Let's do a Jeremy update. I guess you could say that I've perfected procrastination. Or I wanted to get through the holidays without really sinking in to our reality, but here goes. I have to go back all the way to mid October to give you a full picture that's when Jeremy had a routine pet scan to see how the chemo he was on was doing. When we showed up to his chemo appointment later that month his Doctor came in to tell us he would not be receiving chemo that day. The pet showed that new growths had appeared, meaning the chemo was not working. He recommended we take a six week break and let Jeremy's body recover a little since he had been on chemo for so many months at this point.

We made it about 3 weeks before Jeremy decided he wanted to move forward with some sort of treatment. He was going stir crazy thinking he was just letting his body grow cancer....so we met with a radiation doctor and started steps towards starting radiation therapy. The plan was set! Jeremy would be in radiation Monday through Friday the entire month of December.  In the planning stages of radiation they do more scans where they discover that there had been significant new growth. So around Thanksgiving time he finds out that he is no longer eligible for radiation and that he needs to start a more aggressive form of chemotherapy asap. The new chemotherapy is given once a week for two weeks then on the third week he gets a break and starts the next cycle on the fourth week. Last week he completed the second set so this week there will be no chemo.

Ooohhhhh I almost forgot that in the middle of all this fun, Jeremy got shingles! Soooo fun! NOT!! Luckily this happened before he started the new chemo so while it did delay us just a tad it mainly was just an uncomfortable couple weeks for Jeremy.

I think I hit all the highlights (or more accurately low-lights) of the past few months in regards to Jeremy's treatment. We are surviving on all the good days that happened in the midst of those months. We have spent more days with family in those months than normal. We've had more friends visit than usual and we've enjoyed more meals from friends then feel like we deserve. All these things hold us up on our weak days and keep us smiling even when the nights seem dark.

This guy keeps us smiling too, I don't know how he does it but at every appointment he shows up with a smile and continually entertains the nurses and doctors. For now I guess I don't have much to say besides thanks for stopping by for our quick little update over here!

Let's hope 2020 is a little kinder to us all,
Liz

Hug them, please

I've written before about how I am a hugger, I was raised by huggers and I've created two more people who also are good huggers and who enjoy hugs. It's taken me awhile to realize not all children or adults like being hugged so I'm trying to become more conscious and always ask but I definitely identify as a hugger! I've loved having my boys always want to curl up for an early morning snuggle, but now that we've entered that lovely preteen angst-y fun it happens less and less. I can still count on them for quick kiss goodbye or goodnight but the soul feeding hugs have become harder to find.  It may sound silly but I'm worried for my boys because they aren't getting all their hugs! I still find my hugs everywhere, I seek out friends, I hug almost anyone I meet, I've even stopped my car to hug friends I haven't seen but who are going in different directions then me, but my boys main source of hugs is home and they currently aren't having it here. I think they feel like my hugs are trying to cure something or take away sadness. To be fair they 100% are! But that doesn't make them any less needed!! Anyhow this is a simple, small request to those who may see my children, if you too are a hugger (or you aren't but are willing to be uncomfortable for a few seconds) ask my boys for a hug. I know they could use it! ...who knows maybe you could use it too!

XOXO-

Liz

state of tired

Usually right around Jeremy's monthly chemo I get the urge to reach out to the masses (hello if you are out there) and give an update or just a hey from Sac Town! Guess what time of the month is, chemo-time!

So today at the infusion center an older gentleman who was volunteering there playing the piano stopped to chat with us, he told us he had personal experience with the cancer center and told Jeremy to keep fighting the good fight.  When Jeremy replied with a smile "oh I've been fighting this fight for almost 9 years, I'm not giving up yet!" You could see that the man and the nurse beside him were both shocked to hear it had been that long. Once the man walked away the nurse looking much softer said "wow that's a long time to be going through all this." I'm not sure what the correct response is, or what one wants to hear at this point. So a simple "Yes it is" is all that was said. It got me thinking about something though, about how the way people perceive our lives can affect us.

Have you ever heard people say that the best part of getting older is not caring about other peoples opinions of you? Or that as you get older you just say whatever you want? I don't believe I've reached that age yet, but I do think that something similar happened in our cancer story. We started our cancer journey in January of 2011 watching what we said, spinning things positively always, worrying about how those around us would receive the news. Over the years I've stopped doing that. With each recurrence it's almost like a small filter came off with it. I just don't have the energy or want to make my life look pretty for others anymore. To be blunt I'm tired of wrapping my shit up with a pretty bow. So I've stopped for the most part. I think my friends are worried for me because I answer frankly when asked how I'm doing. I think my family wishes they were closer to help with mundane tasks like transportation and meals but honestly I'm fine. Is my life is a constant state of exhaustion, does my house often have mountains of laundry laying around it, am I doing more than my share of the housework, honestly yes, but I would guess the same could be said by many of you. Do I struggle? Am I tired? Hell yea, and now, after eight and a half years, I'll tell you all about it when asked.

I'm guessing a lot of this is no revelation to anyone. It has definitely had me doing a double take on my own life though! I've always considered myself authentic and honest so to realize I wasn't sharing everything felt dishonest. It's taken me a minute to realize that sugar coating it and caring about others wasn't hiding or lying about my life. Just like now not sugar coating sometimes feels crass or rude but it isn't. This messy, crazy life is all mine and it's beautiful and obnoxious all at once and yes I'd change a lot of it if I could.

Smooches-
Liz

New normal??

I keep mulling over this post... Not sure even exactly what I want to say or how I want to say it. There is a common theme though in my life right now about sharing authentically where you are in life.  Usually I love sharing about my life, the good the bad and the ugly but right now I think we are all in a slump and feel like its a lot of ugly so I haven't been as eager to share. Anyhow today after a good counseling session this weekend I guess I'm trying to share.

I haven't really updated much on Jeremy's treatments or treatment plan. Currently he is scheduled to be on chemo until March. He goes every 3 weeks and is there for most of the day. Due to the fact that he's had a couple major reactions (think anaphlylaxis) to this chemo drug he is hesitant to take others or even go on his own so at this point we are both there most of the day. Luckily our kids are older now and can be left home. They also now understand the seriousness of this whole situation so it is always the day we can count on them to be on their best behavior. This is where the fun begins in our current cycle. After chemo Jeremy usually works Thursday and Friday but comes home and crashes Friday afternoon. As the treatments have progressed so have his side effects. Usually the first weekend he's pretty tired, for example this Saturday after chemo on Wednesday he slept until about 4pm then was back in bed by 9:30pm.  Typically by Monday he's back to work, but comes home early and is on pain meds and or anti nausea drugs for about seven to ten days after chemo. At this point he has been starting to feel a little better but then starts with the physical side effects (the ones everyone can see) He tends to develop a rash on his arms and his lips swell/crack and become visibly irritated staying that way for about a week, leaving usually about a week of feeling good and being unmediated. That's when we get to do it all again!

Facetime and Selfies while at Doctors appointments....

The three weeks between his last round was a little harder than usual which also seems to be the trend, that side effects are becoming harder after each round of chemo. One of the shocking things for those who see him is how healthy he looks and seems.  It's hard for everyone to grasp how much he's going through because he  looks and acts so normal. Even though this new normal is happening seamlessly I have to remind myself it is not normal and we all as a family have to give each other a lot of grace to process things in our own time and in our own ways. We all try to cherish our good days together and we are all in counseling to help us with coping skills on the hard days.

Today my ten year old is spending this afternoon creating an art piece we are calling "Cancer Sucks" where he is writing all words he feels, associates or wants to tell cancer. He asked if he could say "all the words" which I take to mean swear words, my response: Yea, Fuck Cancer!

So we go on, not comfortably, but also not ignorant to our truth. We talk about it often because we all have no idea what our future holds and one thing that makes that easier is knowing we aren't alone on the journey.  Anyhow for now I hope that wasn't too confusing, because I'm still wondering if I said anything or everything or nothing or somehow all those things.

Till next time my friends,
Liz

Crush'n it!

Ok this ones going to be a humble brag, or as my nieces say a flex, albeit a weird flex, a flex nonetheless! Sooooo.......I'm writing this from a chemo infusion room, while my boys are home (probably playing video games) on spring break, tonight the boys and I have a movie date planned while papa is recovering from chemo because my family is CRUSHING this cancer game! Ok let's be real, it's taken us 8 years to perfect this and I'm not sure this is something people plan on perfecting but over the last 8 years we haven't gone more then 2 without having some run in with this demon. Even 2 is pushing it, Jeremy has gotten more "routine scans" then most have had dental cleanings in those 8 years so we've had a lot of time to "perfect" this. This is Jeremy's second treatment and while the first went relatively quickly and without incident I know this one will be even better! Last round Jeremy had some pain, nausea/lack of appetite, and fatigue to deal with, this round we've prepared for all of these things. Pain meds are filled and ready at home. Pain is what his doctor is blaming most of the fatigue on so that should be less this round too! I made some super nutritionally dense chicken broth (that is also super yummy) to have on hand for days when eating seems daunting. I know I could be counting all my chickens, but again this round we are killing it!

We are communicating like rock stars. We are allowing room for grieving and processing without anyone completely withdrawing from life. We are all stepping up and helping keep the house moving in a forward direction. I think we have all gotten to a place of understanding of our own needs that we had never experienced before. We have all reached out to people to when we felt we could use support and have luckily created a support network for ourselves in the last 8 years unlike any other! I'm sure the boys age is extremely helpful in all of this but they were never the only ones struggling so I'm sure their age isn't the whole change. Lets be real this has been a very real part of our lives everyday for as long as we all remember. At home cancer isn't a four letter word. While we may not all be shouting it from the rooftops we are all able to say it sucks...but move on. Our household mentality has definitely become while this is in our home it isn't our home. We are still allowed to be happy. We are still able to have fun and play. We are also able to cry or feel sad at a moments notice just because. I think that last part is what I'm most proud of, because that's what I hope sticks even after all this cancer stuff is gone. My boys know pain and joy, they understand good days and bad, their lives will be fuller and more complete because they have made room for all the things that life will bring their way.

Anyhow today I'm here, in the rain, drinking water, realizing we got this shit! Not gonna lie it's a pretty awesome feeling. So my reminder to everyone else is take the small wins when they come. Life doesn't have to be rainbows and unicorns to be good, it can also be chemo and chicken broth.

-Love and smiles from this guy & I

Here we go again.....and again.

Looks like it's time to bust out the ol' blog again... You can probably guess what that mean, here we go again. A few weeks ago we found out Jeremy has another spot and will be undergoing treatment again in the near future. We've met with the Dr once and have heard lots of "options" but as of yet he hasn't decided the best course of action.  He's currently getting second opinions and researching while we sit and fidget, and basically go insane with the wait. We see him next week and should have a better idea of what to expect, but could be a month before Jeremy starts treatment.

As expected this was quite a shock to the boys. They've both expressed their fears with wisdom beyond their age but have also have had moments of fear, sadness and anger which we knew would come. This is the first time we've told them and then asked who they wanted to notify. They are older now, they have a circle, they have friends and they have to right to tell their story the way the want it to be heard and by whom. If you are a parent in their circle, please try and honor their wishes. I know what gets discussed in every home is different and you obviously you can discuss as you wish, but know that over here I have one child who is terrified he's going to be treated differently by his friends and another who went straight to school and told his entire class in hopes of extra support. We are in uncharted territory. Previously we (mainly I) shared our story the way I saw fit, now we have two very different young men living in our home who need support in different ways also telling their truth to the world. We are learning. We are growing. We are loving each other.

This weekend we ran away to Universal Studios with some of the kids' cousins. We made no excuse for our trip, we sugar coated nothing...We are driving 6 hours to get some hugs and to keep our minds busy for a few days. From my perspective the trip was a success. My kids felt loved, and we all got some much needed hugs. I was probably the worst company ever, my mind is not right. In front of my boys I try and smile, as soon as they step out of eye sight the weight in my chest is visible in my face. I see it when I look in the mirror.

This brings me to the point of this blog!  As soon as we share our story with anyone near or far, family or friend the first sentence is "I'm so sorry, please let us know how we can help!" Honestly there's nothing anyone can do right now besides pray, think good thoughts, send us good juju... you know do what you do, to love us from wherever you are.....but if you are so inclined I have thought of one other thing you could do! I want to start a good vibes jar. A jar full of love from anyone and everyone willing to send it our way. My plan is to keep it on the table with love notes, jokes, funny stories, poems, mantras, anything that helps you get through the rough days and that way when any of us is having a shitty moment we can pull a note out to remind us that there is love in the world coming our way. You can email me at lizkennish@gmail.com and I can print them, or you can request my address that way too if you want it in your own handwriting. No thought is too small and no story too long. My glass of sunshine is running low so I am asking you to help fill it.  I'm guessing you'll be hearing more from me in the coming weeks because this has always been my favorite way to clear my head. But until the next time, here's some pics of this weekends fun to hold you over!

Love & Snuggles,
Liz

Secrets and Things....

Long time no chat everybody! Wish I had the time or memory to be able to catch you up on every single thing that has happened in the last year and a half but alas I don't, so let's try for a highlight reel and then move on to my current pondering's. The boys are getting incredibly big, I stare at them and wonder where the time has gone and who these young men are that are now living in my house. It constantly amazes me how very different they are. Sawyer, almost 12, is honest and kind and has a such a tender heart. Oliver, who joined the double digit family this year, is funny and always at the front of the pack in bringing his peers together. They both have faults too, but I'll keep those for another post!

Now my current musings... I didn't start this blog to write about cancer but this is where we've gone over the years. December of 2012 was Jeremy's last bone marrow transplant which is the last time we really considered him in treatment, he has had 2 (possibly 3 if I'm being honest I've lost count) rounds of radiation for spots found since then. Relatively speaking life has been smooth sailing in regards to the cancer part of our life. I mean let's be honest it's been 6 years, it should be easy enough to say aloud by this point right?!?  So why does it still seem like a dirty little secret from our past? I found myself recently telling someone about a "friends" cancer history. Part of this was me protecting myself from someone I didn't know well, but part of me didn't want to be seen differently. A few days later, Jeremy came home and told me he had told a parent from Sawyer's soccer team about his "secret", confused I asked what he meant. He said "he knows about the cancer." I realized then that he too guards that secret. We've never talked about keeping it a secret. We've never mentioned to each other that we wouldn't tell someone. It just sort of happened over time, people who lived that part of our lives with us aren't around as much as they once were. They aren't any less important we just all live such busy lives and our kids now go to different schools and are involved in different activities, but it makes our time with them so special. It also makes our time with them so easy. They know our secrets and love us anyway. With new people we have to actually say the words, and tell the story. We have to relive the painful parts of the past, and we have to see their faces change. We become a story to them. I'm sure some things about us make more sense once they know, but I never want cancer to be an excuse for us.

People who've come into our life post cancer know a different family then the one who started this journey 8 years ago. Whether we like it or not, we are all different people, Jeremy is more carefree then he used to be. I am probably blunter and less tolerant then I used to be. I'm sure my boys are different then if they would have been brought up in a home without cancer but there are some things we will never know. I struggle with not knowing which of their traits would be theirs no matter how they were brought up, and not knowing what we've caused them to be. Would Sawyer be so kind if he hadn't seen such kindness? Would he struggle with anxiety if he'd never felt such anxiety as a child? Would Oliver always be bringing smiles and hugs to his classmates if hadn't been encompassed by our amazing friends arms so much as a child? Would he need so much attention if he'd received more as kid? Just some of the things I'll never know.

Cancer is a part of us, we do live with it's scars, but unlike real scars some days our scars are hidden and we almost forget they are there while other days they are red and angry and stretch across our face for all the world to see. Some day our secret is quiet and all our own, and some days it feels dirty so we try to hide it. I'm trying to allow us all to talk about it without angst or fear, but lets be honest there is fear. In the 8 years we've been on this journey we've not made it the 5 we need to say the words cancer free, remission is a great start but feels incomplete. So today I decided to write again. For me I felt relief when I wasn't the only one who knew my life isn't pretty. I like sharing my good days as well as my bad. I will try to continue to share, and feel free to follow along but know this is an exercise of survival and living my truth.  I'm trying to remember a few things with this post 1-scars can be beautiful! 2-secrets make you feel dirty even when you did nothing wrong. 3-I would have messed my kids up no matter what, so this way something else messed them up and I just get to try and fix them.  Now I'm going back to the awe and wonder that some how I made these two amazing beings.....

Let's get political

Sooooooo......... I honestly wish every aspect of my life didn't seem to revolve around political news, but alas this is our reality.  I am someone who up until recently didn't put all my political beliefs out there for everyone to read, but I can't be scared anymore. This post is the hardest I've written, it scares me to lose friends by sharing my truth, it makes me uncomfortable telling you my truth for I've been ashamed of it, but my fear is calmed knowing that maybe I will make a small change in the world. Small ripples can make waves, and right now I need to make a tsunami!

The easiest way for me to start is with some basic info: In January of 2011, Jeremy and I were both 27. We had two children. We owned one car outright, we were making payments on a second car. We owned a home. We had approximately $5000 in credit card debit  and about $15000 cash in savings. I'm not sure how much but we had money in a 401k for retirement.We were living off one income, had health insurance and had never missed a payment on our student loans. That's it, all of our business on the table. Feel free to judge, feel free to say it wasn't good enough, do your worst! Nothing you can say or do will make me feel anything less than impressed with what we were able to accomplish. We were doing it, we were living the dream. We were making sacrifices to live a life we were very proud of. Before January of 2011 we were unstoppable.

By the end of January  Jeremy had received the official diagnosis of Hodgkin's lymphoma stage four. One of those moments in all the craziness that ensued after, which to this day remains as clear as glass for me happened the day we got the diagnosis. Jeremy's doctor said one sentence "You have good insurance, don't lose it." I asked what she meant, her response shaped our lives for the next few years, "Whatever you need to do to keep your insurance, do it. Without insurance we will not treat you. Any delay in treatment could be life threatening, so whatever you have to do, don't lose your insurance!"

Sparing some of the lengthy medical issues that followed, I'm going to give you some of the highlights of the year after that appointment in regards to our financial life. After Jeremy had exhausted his medical leave from work, his company gave him his notice with a three month severance package which included keeping his health coverage for those three months. By the end of the three months he was still undergoing chemotherapy, and we went on COBRA coverage. We started living off our savings, applied for unemployment, and eventually Social Security. I've had people ask why I didn't go back to work at this point, a very valid question which is why I want to explain what our reality looked like at home. At this point both our kids are so young they aren't in school, and Jeremy is currently so sick that I would wake him to eat. If I left the house I would call to remind him to drink his calories. Returning to work with three people needing care was out of the picture. So we put our heads down and carried on with the help of some amazing friends and family! Within a year and a half our COBRA medical insurance had increased so much it was now costing us more to have insurance then our mortgage. It maxed out costing us over $1700 a month to just insure Jeremy, the boys and I had gotten private insurance at this point because it was cheaper. Slowly we stopped making payments on everything else, first the student loans were differed, the credit cards were maxed out and then payments stopped on, the car payment and lastly the mortgage were all stopped being paid on. We actually called the bank to suspend or adjust our mortgage but because we were in good standing they would not help us.

By January of 2013, Jeremy was finishing up his second bone marrow transplant and our house was in foreclosure. We were able to sell our house as a regular sale because we had equity in it and repaid all the late payments to the bank. That's the good news. The bad, we had lost our savings, we'd spent our 401k, our car had been repossessed, we declared bankruptcy and in doing so lost all our credit, we were completely broken. The only good thing at this point was that Jeremy was still by my side, had I lost all that and him I'm not sure how I would have gone on. It was pretty bleak, but some how I felt we must have done this to ourselves. Now looking back, I disagree.

Why am I telling you all my dirty business? All those things your parents tell you never to discuss with anyone else? One reason, you knowing my business and understanding the importance of things like the Affordable Care Act (which make it impossible for insurance companies to deny anyone coverage) matter! I wouldn't wish my financial burdens on you, but being diagnosed with any "pre existing condition" should not determine the outcome of your life's security. I honestly was naive to think it wouldn't affect every aspect of our lives. Our financial security didn't really play in to my reality at that time.  For us the reality of the cancer is now manageable and under control but the reality of all we lost is still affecting us. We still worry about how much money we have access to daily because we know if it comes back how quickly we will be back to square one.  soooooo......about that ripple, start speaking up!! This is me trying to get you to understand it on a very personal level. YOU can make a stand. YOU can call your local government officials. YOU can be a ripple.  I know it's scary, I'm scared. But we can't let (he who shall not be named) win! We are better and stronger together.

Chats in the Dark

Having kids is a constant growing and changing game. Just about the time you think you have it down, the questions have all evolved. We live by the rule of honesty in our house. I honestly answer their questions and expect the same from them. We all know going in to the parenting gig some day you'll have to have "the birds and the bees" talk, but there are so many other things you'll talk about that you didn't know you would have to. Once there was "Mom, why do you sit to pee but I stand?" That was a fun one that ended with "hmmm can I see?" There has been "Why do I have to learn spanish?" and "Can you make a fart with your armpit?" All valid, sometimes silly questions. I'm inquisitive too so I get it. When something is on my mind it's much easier to rest once I know the answer, even when it's something I don't want to hear. When I decided to have a home birth I went to my first appointment and asked the midwife to give me the worst case scenarios of the births they'd dealt with.  I explained to her that if I knew what the worst thing that could happen, I would be able to decide if I could go forward. I get having questions.

Being a parent it's different because I'm usually the one answering the questions. Which surprising to me means I get to frame the answer as I see fit. If I wanted to lie I could, and they'd believe me, because I'm the mom. I also have the burden of making it make sense. It doesn't always make sense. When my mom got sick my dad explained to me that there was something in her head that was like a un-inflated ball, when she would have her spells it was as if someone was pumping air into the ball. Every pump the ball inflates more, but the skull is meant to keep the brain safe and there isn't enough room for more stuff in there. So the brain has trouble focusing and keeping everything working the more air starts filling the ball. He doesn't remember telling me this, but his explanation of a brain tumor still makes sense to me today almost 30 years after he told it to me. Why does this matter? Or why do I recount these things out loud? Because when my son asks me "Mom, what happens if you die when I'm at school?" I need to remind myself how I answer this question matters. If I make him feel safe right now will stick with him.

I don't know if I made the right choice. I don't know if I even made him feel safe, but I was honest. I explained what a will was, I explained how he would be cared for no matter what. Even when he was sad that if it happened he would no longer be in Sacramento we both agreed Sacramento and this home would not feel like home if mama and papa were not here in it. Mostly we both agreed we hoped this never ever happened....but if it did, we had a plan. After he drifted off to sleep all I could think was this was never a conversation I planned to have. I shouldn't have answered his questions, I should have told him it'll never happen and called it a night. Telling half truths and bending perceptions isn't our style though. We tell the truth even when it's ugly, or painful, or scary. Knowing the worst can sometimes make you better.

Mi Familia

I would venture to guess if you've spent more then an afternoon with me you know how close I am to my family.  They are my best friends, my confidants, my reality keepers, can't get away with shit(ers) my all around favorite people in the world. We ache together when there is heartache, we laugh together when there is joy, we party together......every time we are together and mainly all I remember is the LOVE!! So much fucking love!

A few weeks ago my brother announced he was gonna bring his kids down to visit for spring break, I was of course thrilled, my sisters were not! They were sad they wouldn't get to see them, so they packed up and came up to visit! So we had 5 families in 1 city for the first time in a long time, and it was great! I remember being a kid and meeting up with my cousins at my grandmas house for sleepovers. I remember my cousins being my first secret keepers. Watching these relationships develop amongst my kids with there cousins is magical. They want to be together. They cry about being apart. They love each other soooooo hard it hurts.

These are my kids people, their tribe....

...and if this is the only good thing I do in my life, I will be ok with that.

These ones are mine, and I forever will be grateful because life would be unbearable without them.

Reality vs Hope

I almost started this with the line "you are probably tired of hearing about cancer" but thought if you are then stop reading. I'm sure tired of writing about cancer. I'm 110% over living with it in my home, but somehow can never escape it's grasp on my life. So here I am writing about it one more time.

Last week was a tough one in our home, and surprisingly nothing really happened. The only reason it was tough was because neither Jeremy nor I want to accept our current reality. Again nothing has changed in our reality, Jeremy has another spot on his lung, we've known this for almost 5 months. Nothing new to us, but something neither of us want to deal with. At this point I don't even remember if I blogged about his spot a year ago that was treated with radiation.....mainly because this is my reality. There have been so many spots, so many treatments, so many scans, so many biopsy's I lose track of them all. I also stop talking about them. I used to blog about every last one because it was the easiest way to be sure everyone knew what was going on. Now I'm sitting in a "Meditation Room" at a hospital, waiting for Jeremy to come out of his most recent biopsy while texting a friend about our Easter plans. You know who knows I'm here....my babysitter.

I am not bitter about this in the least. I honestly felt like at one point my families lives consumed a great deal of time and energy from most of our friends and family. Now they have all moved on to their realities and that is a good thing! This is just my reality. Most likely this biopsy will confirm he has a spot of lymphoma and after this Jeremy will have another round of radiation. He will let his direct manager know he needs to work short days for a week, will leave early, drive himself to radiation, come home to finish the work he missed and no one will be the wiser. Our children will not know it is even happening. How mundane this sounds to me is unsettling.

As Jeremy and I were working on our small talk before his procedure we were asking each other silly questions. I asked "What are your 5yr life goals?" His response was not so silly "To be cancer free." So with our reality we can't escape, or past we can't forget there is this small little thing that gets us by...Hope. Every scan, every biopsy, every day, every year we hope this will be the last. One day it will be, but until that day our humor gets us by. As we were greeted by our admitting nurse this morning Jeremy sarcastically told her "there's no place I'd rather be on a Thursday!" As she looked back at him cross eyed she said "you need some help" He looked at her and said with a big smile and no sarcasm in his voice "It could be worse, it's only cancer."

Village Life

We all know that saying: It takes a village to raise a child. I've read a couple things recently saying that wasn't so. That in today's world we don't know our neighbors, and are all so estranged from each other, but I disagree. I think maybe villages are harder to see then they once were. Back in the day a group of woman may have been tending children while another group was preparing meals for everyone while the men were off hunting our next dinner. When one person fell another stepped up and took the load. We all benefited from each other. It's easy to see that it took everyone to raise the children. What about now? I feed my family everyday, Jeremy and I both work, both care for our boys, both are tired and done at the end of the day.......and no village is in sight. So we are doing it on our own? Maybe.

In actuality our village is alive and moving all around us, it just looks different. I live in a town where our closest relative is a two hour drive away. Next a six hour drive away, or a two hour flight. That's awfully far for anyone to step up for a much needed date night. Or what about a kids who's sick and has to stay home from school. God forbid you have an actual emergency, you know one where it's ongoing for months with no end or help in sight...who then do you turn to? That's exactly where the village steps in. I didn't even know I had a village before Jeremy got sick. I thought I had some nice friends. Some like minded people I hung out with on a regular basis. Don't get me wrong I was super happy to have my friends but I had honestly never considered if they would run towards me or away from me if I caught on fire. I now know. Without question there are people in life who step up and run (with reckless abandon) towards those people in need.

I know for a fact I live in village. I'm surrounded by amazing humans who raise me up daily. Thank you for being my village.

Life of fear

I live my life based on fear.  Fear of failure, fear of success, fear of losing someone, fear of disappointing, fear of being left out.  Somewhere in the back of my mind with every decision I make I'm afraid of something. I think this is why I've always been a sucker for peer pressure.  It's easy to blame your bad decisions on someone else and you didn't get left out of the fun along the way. You see I am totally afraid of most things....but fear never (ok almost never) stops me. It's the motivating factor usually.  I have in the past used my fear and peer pressure to do things I knew I shouldn't, recently I've decided to use this to better myself.

I've let my friends pressure me into running a half marathon.  Do you see what I said? I LET them. I'm acknowledging that this is my choice.  I'm choosing to run a half marathon beside some pretty awesome peeps.  This is scary and actually in my head sounds super stupid! Why in the hell would someone, anyone, ok mainly me....Why in the hell would I choose to spend money to run 13.1 miles? DUMB!!   I am fully aware of how dumb this sounds, but honestly I'm scared I won't be able to, and for once I'm using my friends pressure to my benefit and jumping.  Then I will have one less thing to be afraid of.  I'm hoping when I'm old and grey I will be afraid of nothing. I will fall asleep every night knowing that I can do anything, because I've already done everything.

Today I ran my first training run. It was only 3 miles, but I ran it all.  These little feet carried me, and they will carry me further.  Happy Sunday mi gente!

Real Boys Cry

This weekend Jeremy and I had the joy of taking our boys to their first concert, and it was awesome. Many parts of it were just as expected. The twinkle in their eyes and the wonder on their faces was everything we were hoping. Jeremy and I have been to a few concerts and every time the boys would ask if they could go to one, so we started hunting for the right concert...we settled on Zac Brown Band. We listen to a lot of country around here so they know the music already and it turned out to be  the perfect intro to big concerts but it came with one big surprise.

The concert had been going for about an hour, maybe more when Sawyer sat down in one of the chairs we had brought. I assumed he was just tired, it was after all a late night, but I went to check on him to be sure. He asked if I'd sit with him for a little bit. Of course I did. As we sat and rocked out to some great live music, Sawyer snuggled into me and said, I feel like crying.  Usually this isn't something you want to hear so I asked him why "Mom, I'm just sooo happy! I can't believe this is happening and I just, I'm just so happy!" Feeling so loved that you want to cry is not a feeling everyone gets or is able to verbalize, I was stunned by my sweet boy once again. I responded the only way I knew how "Cry Sawyer, if you are so happy you need to cry, please do!"

Before the words were even out of my mouth he had leaned in and was sobbing!! Not little tears, big giant alligator tears rolling down his cheeks, heaving sobs coming from his chest, my heart melting in my chest. I have held tears before, hell I'm probably holding some now, and that pain is immense. It is also too often what we are told, we are told to hold it all in. Told to suck it up, to get over it...whether it's joy or pain the sentiment is keep it in. My little man looked up at me and his eyes said thank you. Tears streaming down both our cheeks I said again "anytime you need to cry that is an ok time to cry, and I will hold you anytime you want." He cried more and you could literally feel his body softening. He finally let go. I know joy started those tears but they were filled with fear, and sadness also. I couldn't believe he had held it so long. I couldn't believe he thought he needed to hold on to it longer. He needed permission to let it out, and that was hard for me. I don't want to raise a man who can't cry. It will do him no good to hold it in. I whispered in his ear how proud I was of him, how much he was loved, and how special it was that next time we hear this song on the radio I will be able to think about this moment, sitting under the stars, holding my heart in my arms. We spent the rest of the evening cuddling in that chair, and it was perfect.

As we walked back to our car with his hand in mine he said "Mom thank you so much for inviting me to this"

The Other Side

So last month Jeremy completed his radiation and once again our waiting game begins. He will be rescanned in a few months, and until then we sit in limbo. I've said it a million times but geez waiting sucks! The unknown is scary, and you somehow forget how scary till you are here again. Luckily summer is upon us and we have lots of adventures planned.

Yesterday as my children were finishing their last day of school I had the opportunity to sit and chat with a woman, a woman I'd never met, yet knew sooo well. I knew her fears. The ones where you will be a widow, raising two kids, all the while wondering how this is your life.  I knew her tears. They come from seeing your best friend become someone you don't recognize and wondering if you'll ever see them the same again. Tears of fear you are failing at providing the love your children need while also caring for your spouse. I knew her.  I also knew her strength. She is the embodiment of selflessness, someone who doesn't stop when she is tired, who loves more then she knew she could and she is the warrior her family needs. I knew her because we stand in the same arena.  Although her husband is the one battling cancer she is fighting too.

Seeing her reminded me so much of my past. I forgot how much I had to fight. I had to fight every second of everyday for my family. I forgot how much it hurt. Pain even emotional pain is remembered in your body, looking into her eyes my heart began to hurt. My stomach was in knots remembering. I left feeling exhausted and exhilarated at the same time. Exhausted because it was hard to bring it all up. To share the journey was scary, especially because I couldn't say "but don't worry it all gets better!" I couldn't lie to her. It gets easier, but the fear is always there. The easier is where the exhilarating part comes in. Some days it's easy to feel that life is crushing me, I forget where I've been and how much has changed. I doubt myself in the arena. Seeing her and knowing her fears I know I'm not in that battle anymore, and  that is exhilarating.

I know she will get through, I could see it in her face, but today as you go through your day battling your way through life send some love to my new warrior friend for she is my past and I promise she needs love.

These are my monkey whom I fought for everyday. They are why I continue to fight!

Just a Kid

Recently my Sawyer has been acting differently, it's hard to put words to it, just not himself. His cheery disposition felt like it had been shoved under a rock, he wasn't always mad, but there is a sadness in his eyes that wasn't there before. At this point I don't even know what "before" means. I mean when your papa's been sick since you were four is there a before? Either way up until this point I've felt like my kids have handled Jeremy's cancer stuff really well, for the most part you probably wouldn't even know it was a part of their lives. This recurrence is different though, call it age, call it memory, who knows but they understand more. This didn't bother me until this week. There was an afternoon this week where a "keep your chin up" anecdote led to a full thrown melt down. Honestly I'm ok with melt downs, I mean I want to every now and again how can I expect more from my kids, but this one broke my heart. Sawyer surprisingly quickly burst,  tears streaming down his face while kicking his feet the words "I hate Papa's doctor! What's wrong with them? Why can't they fix him!! They suck and I hate them! I don't want my Papa to die!" escaped through his sobs. As I tried to hide the tears now streaming down my face I finally understood his saddened face.

This boy, my baby has a weighted heart. He has been carrying this burden, this fear for too long.  With every fiber of my being I wish I could take his pain. I would carry it for the rest of my days if I could. He is eight. Hopefully not even an eighth of the way through his life, yet he is already burdened with a crushing load. I am amazed by his resilience and strength but saddened by the need for them. I'm constantly scared for his future because life can be hard for all of us, but starting with this much weight may prove too much. He's just a kid. A boy, a boy who should be running and jumping and swimming and not worrying his father won't be here tomorrow. I shouldn't need to explain what it looks like to die from cancer, he shouldn't care.

Someday this will be a gift, I tell myself that a lot. I am struggling immensely with this "gift". I can't take his pain all I can do is give him tools and hope he surpasses every hope I have for him. I have to love him more. I have to hug him more. I have to remember everyday, he's just boy. I need to give him his childhood, for it's being robbed from him faster then I can even see it going.

Love, Sunshine and Rainbows

So on this day of mandatory loving, this is just  note about hating love sometimes.......
In the last year I have started and continued going to the gym, people around me have noticed and encouraged me along the way. Many have asked how I do it, honestly I think the only part that confuses them is that I get up at 4:30am to work out, but either way I have said every time it took me 5 yrs post last kid to be able to do any of it. I wake up at 4:30 because it doesn't effect anyone in my house but me. It makes the least waves and it creates the biggest calm.

This week reminded me exactly why it took so long to make ME a priority. This week I wasn't the priority. This week I went from dealing with one sick kid to another to a sick adult. This week I fell into a very comfortable, familiar role, albeit one that I do not like, familiar nonetheless. In this familiar role I  was up all night propping coughing kids up or getting ice packs for feverish heads and I was missing work (and night's out with friends) to cuddle my loves.  The only difference was this week I was still trying to make time for me, several times this week as I was leaving the house at 4:30am I was not the only one awake, and it's hard to leave when you haven't slept all night and are already leaving the house awake. I cherish my mornings now. I love waking up by myself, getting a great work out in, then returning home to a hot cup of coffee and shower before anyone else has even cracked their eyelids open. I have come to enjoy the moment I take for myself everyday, and feel like a better person the rest of the day because of it.

Trying to be everything for everyone in my house is extremely exhausting, any mom will tell you the same thing.  Yet it doesn't change the outcome. We still try to be more then is humanly possible. We still blame ourselves when we aren't. We still give and give till there's nothing in us for us. This week reminded me of that. I fell into bad eating habits, I skipped my me time, and I was grumpier because of it, but here's the kicker....I'll do it again next week if I need to! My family does come first. I will stay up all night every night if that's what needs to be done, I will make sure they are well before, after and during anything I do for myself. It sounds crazy, even as I type it I'm thinking you are insane! My only solace is that right now today, I have felt the freedom of having me time, I know what it takes to make me a priority, and I will do it again. I will struggle through these moments, and I will not be (too) hard on myself because love makes you do strange things sometimes.

....Let's be stupid together!

Life in the ish

I don't know why or how but ish has recently become my new adjective of choice for most everything... Did you have a good day? "It was good-ish" How was your dinner? Did you like it? "It was tasty-ish, I guess" I could go on for days (ish) if you wanted, but I think you probably get the idea, and it's probably not the first time you've heard it used so I won't bore you. Today's "ish" I used a lot was to answer this question How are you doing? or this one Are you ok? to both I just say "ehhhh fine-ish?" There's not much else I can say.

So when I sat down to write tonight my intent was to start by writing about privacy and how sometimes even me who claims to be an open book needs it, but when I started nothing came out. I didn't know how or why to write about wanting privacy so I'm not going to, but I am asking for (somewhat) silent support. For some of you who only comment or see this on here or my facebook nothing will be different, but if you are my friend and see me and my kids out and about please don't bring this up! You see my kids hear everything and they sense things, and they are sensitive souls who've been through more then some adults, so as their mama I'm playing guardian...please let them be safe in their bubble.

As you may have guessed with my vague beginning we got Jeremy's scan results back, you probably also guessed they aren't what we were hoping for. They have NOT told us his cancer is back, let me be clear, they do not believe his cancer is back, but the scan had a few things that needed further examination. We have always been honest with the boys so until they can definitively say he does or does not have cancer we not discussing anything with them. The first concerning thing is Jeremy has a growth on his liver, a small little cyst like thing. Jeremy's Dr was very clear on two things about this, 1-it would be very odd for his Hodgkin's to present only on the liver and nowhere else in his body 2-it would be very early for a secondary type of cancer to be showing up. So what does that leave? She believes it's just a small benign cyst or hemangioma, she is fairly certain it will just be one more thing we keep an eye on but we are doing a more in depth scan/ct/mri (honestly can't remember which) to be certain. The second concerning thing on his scan was a discoloration area on his lungs.  I hesitate to use the word spot, because a spot on his lungs sounds like cancer. His Dr was again very convincing in her argument that she doesn't believe it to be cancer. She thinks it looks more like lung damage, which you may think doesn't sound much better but I think sounds a world better then cancer. Lung damage is a very likely thing for Jeremy to have, because although he's a 32yr old man who's never smoked a cigarette he's a 32yr old man who's had pretty major surgery to his chest and who's been on some pretty toxic (specifically lung toxic) chemotherapy's. So again a different scan/ct/mri thing is needed to clear everyone's minds. In the medical world, especially when you have as long of a history as Jeremy does, they talk a lot about the way "you present" meaning how the cancer shows up. Jeremy has presented the same every time. Every time. A very obvious "lit up" node or spot or a whole Christmas tree has shown up....this is not the case today. Today's scan looks clear.

So I choose to believe this is not cancer. I'm taking the hope his Dr is giving me. I'm having faith in life. I'm choosing to be ok-ish.