Saturday, April 29, 2017

CancerCon Day 1

So. It's just after midnight. I'm sitting in a dark hotel room. One roommate is sleeping, the other is still out.

And here I sit.

Exhausted to the core, and yet still unable to sleep.

Not for the usual reasons though - no anxiety, no one who needs me to take care of them. Just me, sitting here, reliving today and smiling, knowing that being here is so important to me.

Today, the first official day of CancerCon was, well in a word, awesome!

Lots of laughs, lots of hugs, so many good conversations, and at one point, I folded myself into a suitcase (more on that later).

There was a lot of fun and games today. It will, at first glance, look like CancerCon is one big party in which we all come and just hang out and have a good old time.

And we do.

But.
But.

But there is more to it in that.
In the midst of the laughter, there are tears.

We party, but we share our stories. Sometimes these stories make us laugh. Sometimes they make us cry. Sometimes the stories are currently in a good spot. Sometimes these stories do not come with a happily-ever-after-ending.

We party, but we bond. We bond with people who have had cancer. We bond with those going through treatment. We bond with people who have rare cancers. We bond with people wh have our cancer. We bond with people who take care of people with cancer. We bond with mothers. We bond with fathers. We bond with daughters. We bond with sons. We bond with husbands and wives. We bond with doctors. We bond with advocates. We bond with representatives of companies.
Sometime we bond over shared music tastes, or we find another Doctor Who fan who wants to play Pokemon Go too. We bond with someone else who pulls out some knitting. We bond with someone else who is here for the first time. We bond with people who have been to almost every Stupid Cancer conference ever.
Yes, we bond a lot.

Because there's something here so many are lacking back at home: people like us. People who had cancer but don't look like a "typical" cancer talent (whatever that is supposed to mean). We are surrounded by people who don't say "But you can't get that cancer when you're young!" Because we're all young, or we were young, or we take care of someone is young. We have freedom to say things like "fuck cancer," or "cancer brought me some good things," or even "cancer was a gift to me." We toss around names of chemo, of drugs, of number of radiations treatments. We exchange stories about doctors who suck, doctors who go above and beyond, or about that one time we puked on the cute doctor!

Some of us are bald, some have short hair, some have medium hair, some have long hair. Some of us miss our normal hair and can't wait for it to grow back and some of us have discovered that damn, we look good with short hair!

We talk about pain management, of things that hurt, of things that don't hurt anymore. We mention we are going to take a break to get a nap in and no one says things like "geese, must be nice to nap" because we all know that no one wants to actually take a nap and miss what might happen because it's fun here, but our bodies are crying for rest.


We talk about anxiety and how we are scared the cancer will come back even though it's been a year, or two, or five, or nine, or eleven.

We talk about how our cancer is progressing even with treatment and we hope that we will still be around in a year, or two, or five, or nine, or eleven.

We talk about how lemons don't cure cancer. And if they did they'd cost a lot more money and probably not sold at a supermarket.

We talk about the people who took care of us. Or the people we took care of.

We talk.
And talk.
And talk.

And we listen.
And listen.
And listen.

And from the Instagram posts or from the outside looking in, it looks like a big party. But it's so much more. It's knowing you are not alone. It's knowing you aren't the only person struggling with the issues facing you. It's not being the youngest person in the room by 20 or more years.

It's about community.
And family.
And not being alone.
And yes, sometimes it's about partying and having a good time. Which means sometimes we been ourselves into a suitcase to get the points for the scavenger hunt for our team. And it's about handing someone a tissue as their eyes fill with tears.

Because we know.
Because we get it.
Because we are linked in ways we never asked to be linked, but now that we are, we can become friends and form relationships.

And that is a wondering thing.

Just think. This is only day 1! Wonder what day 2 will hold!

Wednesday, April 12, 2017

Phoning it in

The last few weeks have been a bit on the rough side around here.

[side note: In what we'll call fair disclosure, there have also been some really fun and great moments as we have a French foreign exchange student, which maybe I'll blog about later!]

Anyway, there have been some not fun side effects. Higher levels of stress. And some bad news from friends and loved ones.

Boo. Hiss. Cry. Be sad.

So tonight, I'll ordered dinner. We rarely order dinner, except for pizza nights. Like, not counting pizza, I can't remember the last time I ordered dinner. But I just could. not. make. dinner. tonight.

And then I flashed to my grandmother's funeral late last summer.

My grandma was 98 years old when she passed away. She passed away in the bedroom she was born in. In the house on the farm her parents started. Eventually her and my grandfather took over.

At the funeral people were sharing memories. One of the memories shared was going to her house to wash jeans, which took a long time.

Grandma had 9 children. And a husband. On a farm.

Something really resonated with me that day, that I thought of today.

Grandma couldn't take a day off. She couldn't just decide to not make dinner. Or to wash all the jeans. Or other laundry. Or cooking food. Or all the things she had to do.

And I think about today. Where I have an electric stove, a microwave, a dishwasher, a washing machine, a dryer, a car, tons of grocery stores, only three kids, etc, etc.

Which makes me think, damn, grandma was a strong woman.
Which makes me thing, damn, I'm lazy.

Though I don't think I'm lazy.

But I wonder, did grandma ever wish she could make someone else make dinner. Did she ever call a friend or relative and say hey, today's been rough, can you help me feed all these people. Or did she serve leftovers once or twice not because it was all she had but because she didn't want to cook more food. And if she had, could she have admitted it?

What pressures were on her as a mother as the ebb and flow of life rushed on around her?

I never asked her.
I never even thought to ask her.

I wish I had, honestly.

I suppose this is a case of you didn't know what you wanted until it was gone.
Or I took for granted that she could have taken a break, or not made dinner, or skipped laundry one week.

I'll assume that when my grandma was in the throes of motherhood and had some bad days, heard bad news, got sick, that she didn't take a break. That she had to buck up and make dinner anyway.

That said, I'm glad I could literally phone in dinner tonight. And I won't take for granted the ability to do that.

Tuesday, March 14, 2017

I've become a commercial

Today I have to go to the doctor's and get a shot. (Boo because I hate hate hate needles. Even still. Even after being poked a million times. Still hate them!)

This shot is medicine that I'm pretty sure comes with a novel that lists the possible side effects.

I feel like I'm now one of those people in medicine commercials you laugh at. You know what I'm talking about, right? The side effect list seems to go on forever and run across the screen over-layed on a really pretty picture. And it all seems funny because the side effects seem way worse than what the medicine is treating.

Trust me, I've laughed my fair share. I've mused aloud about who would ever take the medicine because the issues seems easier than the medicine would be.

I suppose I became that person the second I took chemo. I remember thinking about how ironic it was that the doctors were telling me that another cancer was a side effect and I just couldn't wrap my mind around it. I mostly ignored it because it just too much to think about. I also understood that even though they had to tell me the side effects, there was little chance that it would actually happen to me ::knock on wood::.

But Tuesday I'm going in with my eyes wide open. I've looked on-line and read the awful horror stories. The doctors have talked to me about what could possibly happen that's pretty major. And there's more of a risk than getting cancer from chemo drugs.

People who have opinions that I seek out have said they wouldn't get the medicine if it were them. My husband isn't thrilled I'm getting it and would be very happy if I told him I changed my mind.

And yet, I'm going to let the doctor give me this shot.

I also read stories about people who had almost no side effects from it. The doctor gave me the option of another medicine and after comparing, I decided on the shot. But secretly, I'm so nervous to go. I'm worried that I'll make everything worse and compound my already stupid medical issues.

To be honest, I'm pissed I have to even need to think about this. I'm frustrated with my own body. I think it's super unfair that at 37 I learned I have osteoporosis and because I want to, I don't know, take a bike ride with my kids when summer rolls around, I have to do something to treat it. But because of my age, I only have two options. Neither of which excite me or make me happy.

When the doctor called to let me know that I had osteoporosis (when I was just getting a dexa scan as a baseline), I'm not going to lie: I cried. And cried. And cried. I mean full on sobbing.

It's another thing to deal with.
It's another pre-existing condition in my medical file.
It's more doctors appointments.
It's more medicines.
It's more co-pays.
It's more worry.

Not to seem overly emotional about this, but I'M SO OVER THIS CRAP.

Sigh.

So today, I'm going to feel like I belong in a commercial. One that I would have laughed at in what feels like another life time. This time I'm not laughing though. Sigh.


Monday, March 13, 2017

Exciting news

I should have come and blogged this the moment I found out, but as you can tell, not much blogging taking place around here these days!

That aside, I have some really exciting news. I'm going to be in the Chicago's Listen To Your Mother show this year! I'm so thrilled about this. Not only is it going to be fun to take the stage again after doing it in 2012, but, this time around is going to be even better.

If you check the cast list, you might notice that another participant shares the same last name as me. My 14 year old Emma will also be in the LTYM show! She has been trying out for the last several years and wasn't cast. And I have to tell you, that I admire her for trying again and never giving up. She didn't let not being cast get her down - she kept trying.

If you remember from 2012, I almost died before the show because of nerves. And she's 14 and ready to take the stage by storm (but a friendly, happy, lovely storm!).

Anyway, we'll take the stage on Sunday, May 7. If you'd like to be in the audience, tickets are on-sale right now. And naturally, Emma and I would both love as much support from the audience as possible. I still might be terrified to take the stage this time around, just slightly less than last time.

I can't wait! Two months to go =) 

Thursday, January 19, 2017

Surgery Preparations


So two days ago I underwent a total hysterectomy with bilateral salpingo-oophorectomy. This is a fancy way of saying they've removed my uterus, cervix, ovaries, and fallopian tubes.
(I'm writing this before surgery and setting it to post later, just in case you were reading for an update!)

I've been delaying this surgery for a few years, but it was time to do it now for several reasons. I'm hoping my iron levels start to go up. This should help prevent a cancer recurrence. And stop all the issues I've been having with ovarian cysts.

And still, I'm not quite thrilled about having another surgery and going under the knife again. But I'm smart and trust my doctors and recognize that it's time. And if there's anything I know about, it's getting ready for surgery.

So I thought, I'd share with you what I did to prepare for this upcoming surgery. Most of which I've done before my other surgeries.

Around the house:
  • I cleaned what I could and tried to get as much laundry done as possible.
  • Since I usually drive the kids to their things, I left a list of regularly scheduled things for the husband to drive.
  • They have a few things coming up that are one-time events. I have already lined up rides for the kids with other (very helpful and kind) parents.
  • We have temporarily set up the room on the first floor for me so I won't have to do stairs for a few days. 
  • Left the husband with a list of important passwords, not that I think he'll need them, but just in case. 
  • I took care of things on my to do list that I've been procrastinating on (it's amazing what surgery prompts you to do!)
In the bedroom:
  • Fresh sheets on the bed because that's just nice any time! 
  • I've pulled out some clothes from the dresser drawers/closet. 
  • The clothes are now folded and sitting on the top of the dresser so I have easy access to them (sometimes after surgeries, it's hard to pull those drawers open - this was an issue after my mastectomy and with some of my reconstruction so I just do it now with every surgery and it just makes things easier).
  • I bought a paper holder and did not put paper in it, but it perfectly holds the tablet, the kindle, and my cell phone.
  • I got a holder for my phone cord so it won't fall to the floor on me.
  • I have a special wrap light so that if I need light in the middle of the night, it's right there for me.
Random things:
  • Clipped my nails so I won't have to worry about it later
  • Bought some pajamas that are wicking fabric in case the hot flashes kick in really badly
  • Bought some button down shirts - I used these after my mastectomy and it was so nice. Someone suggested that I might want to do that for the first few days after this surgery as well. I had already gotten rid of my other button downs (as I don't normally wear them)


Things I didn't do this time that I normally do:
  • Make some dinners in advance
  • Line up dinners from friends
  • Line up some activities for the kids 
  • Get a haircut so I wouldn't have to deal with my long hair - which I will now. Bummer.

For relaxing and passing time as my body heals:
  • I splurged and purchased kindle unlimited and got my 10 book limit.
  • I used my library's on-line site and downloaded my 5 book limit.
  • I was gifted the Texture app and it's all ready to go.
  • (Side note: the texture app gives you access to a lot of magazines and you can read whichever ones you want, whichever articles you want for a monthly fee. It's pretty amazing and I am already in love with it and have read so many interesting things. It's great for those moments you have 10  minutes to read, or when you aren't feeling well and you don't want to have to remember details from a book!)
  • I stacked a few actual books in case my eyes are bothering me and I can't look at screens.
  • I stacked a few videos in case I want to watch something. 
  • Have some games ready to play on the tablet along with netflix, amazon prime, and on demand app. 
  • And of course, I have some knitting ready to go

This surgery is a bit different than the others because my husband will be able to work from home for a while - which will make things so very much easier. And while this means that he will be working, without a commute time, he'll have more freedom to do things like cook, help with cleaning, and being the taxi for our children.

I know I have a lot of things listed to help pass the time, but I am definitely using this time to just let my body heal. I have been feeling so unhealthy lately. So not only will this be forced time to heal from surgery, but to just heal my body in general. Especially with my husband getting to work from home, I'm trying to frame it in my mind that this is really just a vacation for me and a time to relax. Not that I'll do nothing, but I'll take it as easy as I can.

Anyway, I think I prepared well before surgery. In fact, I'm positive I over prepared by a lot! I suppose I'd rather be over-prepared and not under-prepared!

Tuesday, January 17, 2017

A Night Away

So the other day, I did one of the nicest things I've ever done for myself: a booked a hotel room. With a jacuzzi tub. And a fireplace.

It was local - I didn't travel far.
I got a good deal because I booked it last minute.

And I'm telling you, I'm pretty sure I need to do this at least once a year with only one change: two nights instead of one!

On the way to the hotel, I stopped at the store and bought dinner and snacks - I knew once I was in the room, I wouldn't want to leave, so I came in with more than I needed.

I brought knitting, chocolate, scented stuff (but not too scented) for the tub, my tablet, and a book to read.

Can I just tell you how wonderful it was? Because it was.

It was over the top, it was a huge splurge, and I loved every single moment of it.

I took the loveliest bath I've had in a really long time.
I started and finished an entire book (The Great Christmas Knit Off - a light read that was just perfect for the occasion!)
I ate too much chocolate.
I streamed a tv show I enjoy.
I had a few glasses of Sparkling Grape Juice.
I sat in front of the fireplace.
I slept in really late.

I had a bit of time by myself. And then my husband came and joined me. It was the perfect mix of alone time and together time.

It was definitely an over-the-top extravagance and I loved every single moment of it. I don't regret doing it at all.

It's hard to leave sometimes when you're the mom. But, we all know the whole if you're cup is empty how can you help others line of thinking.

I'm not sure if one night away refilled my cup per se, but it was enough to get me through for a while.

Monday, January 02, 2017

Oh 2016

A poem I wrote in April
It's the start of the new year.
A time to reflect on what's coming and what has passed.

I won't lie.
2016 was not the greatest year of my life. In fact, it is probably in the top 3 of worst years ever.

It wasn't all bad. The year started well. Winter and spring were good.
There was time with my family. There was CancerCon. There were good days for sure.

But spring turned into summer. And everything seemed to fall apart.

I think my 5 year anniversary of diagnosis might have set it off. Or maybe just life in general. Or maybe a medicine I take. Or maybe nothing. Maybe it was meant to be.

But quickly, before I could realize what was going on, things seemed to spiral down, down, down, and when I thought it couldn't go any lower, it did.

I knew I was in a bad place. I tried to fight it - I did. But I reached the point where I didn't want to get out of bed in the morning. I thought how much easier it would be to just lay in bed and not get up. That was all. I just wanted to stay in bed. I didn't want to parent. I didn't want to cook. I didn't want to clean. I didn't want to read. I didn't want to knit. I didn't want to watch tv or stream anything. I didn't want to shower. I didn't want to do anything, but stay in bed.

Thankfully, each morning I was able to talk myself into getting up and doing the absolute minimum of things I needed to do.

I was also at this time having issues with medicine that caused a lot of pain. I was getting migraines. My iron dropped again.

So I would get up, do what needed to be done, and then nap.

I was truly exhausted. I was truly in pain. I was truly burned out.

I also realized that I was truly depressed.

Pain, depression, disease, anxiety - there's a circle there can feed on itself once it's started that can be very hard to stop.

There was also grief and guilt and feelings of inadequacy. I felt this surge of anger.  I was mad. At everyone. At everything.

But mostly myself and mostly cancer. Everything cancer took from me, every side effect cancer gave me, everything I couldn't do, every time my body hurt, every time I had to say no I can't do that. There was anger. And anger. And even more anger.

That's when I knew this couldn't be fixed by me alone or fixed with sheer will.
So I went to a therapist.
And I went to a doctor.
And I talked.
And I started medicine.
And I was diagnosed with PTSD that includes depression and anxiety. 

Is it all helping?
Yes. It is.
But.
There's a lot to unpack.
It doesn't get fixed overnight.

And there's still the medical side of things: pain, low iron, fatigue, stomach issues, migraines.

Basically, I mostly feel like I'm a hot mess.

I haven't talked about it much. I haven't talked about it with many people.
Honestly, I feel like a failure. I feel like I don't have a right to have PTSD. I feel afraid that if I share, people will treat me differently. I worry people will think I can't be a good mother through this. I feel ashamed.

Of course, now it's a new year! And it's time for a new beginning!
Or not.
This doesn't end because the calendar changed.
I don't suddenly cast out all my demons because it's a new day.

I'll keep doing what I'm doing though.
Except, I won't hide it as much.
I'll try to wash the shame away.
I'll try to remember that life is hard and beautiful and complicated and wonderful and awful and bittersweet and full of moments that take your breath away from awe and sometimes from pain.
I'll try to remember compassion - for myself and for others.
I'll try to remember love - for myself and for others.
And I'll try to remember patience - for myself and others.

I'm not sure what 2017 will hold in store for me.
I'm not sure where I'll be standing 12 months from now. 
I feel pretty confident though that I'll be doing my best to do whatever it is I'm doing then.
That I'll still be working through this huge bag of emotions. That I'll be trying my best to be as healthy as I can. And that where I am in life is where I am, and that I'll still be learning to not focus on where I think I should be.