Thursday, January 28, 2016

Where Do I Sign Up For Just One Year?


Recently, CJ (Dian) Corneliussen-James, of Metavivor, wrote a letter to Fran Drisco of the National Breast Cancer Coalition.

CJ, in her letter, makes many points I agree with. We need to make sure that if we are talking about the end of breast cancer, our eggs are not all in the prevention basket. We need to make sure that stage iv patients are included. We don't just need prevention, we need treatment, life-prolonging and life-saving treatment. There are many woman living in the US alone with stage iv breast cancer. If our focus is solely on prevention, we are basically leaving them out in the cold, on their own.

I do not have stage iv breast cancer. I have not had stage iv breast cancer. I fully admit, I don't know what those with stage iv breast cancer feel like, or what they face. I can sometimes imagine parts of it. I still use my voice, as I have many times on this blog, on social media, when talking to friends, to advocate for stage iv breast cancer. I recognize that while I had breast cancer and someone with stage iv has breast cancer, our experiences, our treatments, our lives are different. (note: this extends to people who did have the same stage as me, or maybe were stage ii or stage i. We all have individual experiences).

I imagine at times, those with stage iv breast cancer must look at those of us who are NED (no evidence of disease) and feel jealous. And wonder why I am NED when s/he is not. I imagine that my complaints on twitter might seem trivial to my friend with incurable brain cancer. I imagine when I talk about a conversation with my daughter about if I were to die, that must seem easy to the mom who is about to enter hospice because all treatment for her breast cancer has stopped working.

I can imagine all of this. I can fully understand how one could feel this way.

I agree it's not fair. I often wonder why I got to be NED when so many really fantastic woman did not. I often wonder why I am alive and friends have died.

Which is why I speak up. I talk about stage iv breast cancer. I talk about funding research. I talk about not excluding those with metastatic breast cancer from October breast cancer awareness campaigns. I share facts with friends, strangers. I talk about these things in person, on-line, in this blog. I share blog posts written by metastatic patients so that other people can see things from that woman's perspective. I read the posts so I can learn too.

I am not perfect in this, but I do try.

I try to be a "fearless friend," (a phrased coined by Rachel Cheetham Moro - who passed away several years ago from breast cancer).  I try very hard.

So when I was reading CJ's letter, and then I came to this part

Breast cancer is not the problem. You lose a breast, you have a medical year to endure and life goes back to normal. I know I will take flack for this statement … but hey … while I sympathize that some people spend many years thereafter in fear of metastasis, the simple truth is that their problems pale when compared with ours. I and every other metastatic patient out there would trade places with these former breast cancer patients in a heartbeat – their odds of survival are 70% … ours are 1-3% … that’s a huge difference in odds.

I kind of did a double take.

Wait. Did I just read this? Did she really say I just had to endure a year and then life goes back to normal? Is what I went through being trivialized?

I'd like to think that CJ did not mean to trivialize what I went through. I imagine there is a lot of frustration and anger for the lack of research into stage iv breast cancer, for all the times that stage iv breast cancer patients have been eliminated from the conversation. I believe she would trade places with me in a heartbeat. I don't doubt any of that.

But, um, can someone tell me where I sign up for my one year? Please?

Me, on the 4 year canceriversary
It's been four years. And I feel like maybe I'm almost sort of close to starting to feel normal.
I get it. Four years is a gift really. Given that metastatic patients have a median life span of 26 months, my four years really is a gift.

But it wasn't a year of cancer, and then poof! All better. It was a year of cancer treatment. That led to infections. That led to lymphedema. That led to physical therapy. That led to menorrhagia. That led to low iron. That led to more surgery. That led to allergic reactions. That led to hospitalization. That led to thyroid goiters. That led to chronic fatigue. That led to migraines. That led to brain fog. That led to missed social events. That led to missed work. That led to missing things with my family. That led to new medicines. That led to new side effects. That led to, well, a lot of things.

It wasn't just a year. It's been a crapload of things that all seem to pile up. It's been days where I can't get out of bed. It's been days where I feel useless. It's been days where I feel like the worst mother ever.

And yes, it's been fear - fear that the cancer will come back. Fear that the pain I experience today will never leave. Fear that the side effects won't get better. Fear that I will never find normal.

These are my experiences and my fears.

I realize these are different fears and worries and issues that those with stage iv breast cancer are dealing with. I realize that the fact I'm still here, four years later, to deal with all of this is a gift in itself.

But it doesn't make my day-to-day life any less painful. It doesn't make the migraines hurt less. It doesn't make the joint pain disappear. It doesn't make another basketball game I have to miss magically get canceled and rescheduled for when I'm feeling better.

I will continue to be a fearless friend. I will speak up about metastatic breast cancer. I will continue to push for awareness and education. I will continue to push for more funds into research. I will keep doing this.

But don't let that fool anyone. I still have difficult days. And hard days. I won't trivialize any one's cancer experience. I will continue to be a voice of advocacy and love and understanding. Because I believe that this is the best path to continue down.

Wednesday, January 27, 2016

Can't We All Just Work Together?

My 2012 Avon walk TEAM
It seems lately I've noticed some things going on both in real life and in social media.

Okay, none of it's new, it's just bothered me more lately.

There's this whole cancer competition that some people take part in.
If you've been in it before, you know what I mean

Oh, you had cancer once? Well, I had it twice.
My tumor was way larger.
Huh, no chemo for you? Aren't you lucky. I did chemo.
Your doctor only gave you 28 radiation treatments? I did more.
16 rounds of chemo? Nice. I did 32.
Stage ii? I'm stage iii.
Stage iii? Oh I'm stage iv.
You did implants for reconstruction? I did diep. It's way better.
You still eat sugar? I gave it all up to be healthy.
Oh you think cancer sucks? I don't, so you're doing it wrong.
I worked through chemo. You didn't? It's a shame you aren't as strong as me.
Thyroid cancer? Pssh. That's easy cancer. I had brain cancer.
Oh you were treated at the local hospital? I went to the best downtown so I could have the greatest chance to be cancer free.

Alright, I admit - three of these I wrote based on what people implied. The rest, I've actually heard or read

Regardless, the cancer competition is strong in some people.
And all I can think is what the hell people?

Does it matter who had it worse? Doesn't it all just inherently suck?

Listen, I get it. Chemo sucks, so not getting chemo might seem easier, but maybe that person had to do radiation and that made them sick? Or have surgery that was hard to recover from? Or maybe that person has 2 young children so any treatment - with or without treatment was difficult. Or maybe that person didn't get sick, didn't have chemo, doesn't have other extenuating circumstances, but cancer still sucks.

Sure, we can argue that there are varying degrees of cancer suckage, but it all sucks none-the-less.

And guess what? If we are all sitting here worrying about who had it worse, if we are all busy fighting over what's "good" cancer and "bad" cancer, or dividing the community with ads where people say I have the "bad" cancer and I'm jealous of those with the "good" kind, how can we come together to fight against cancer. Together. All of us. One big group of people. Fighting to end cancer once and for all.

Cancer is a complicate disease, because it's not one disease - it's many diseases. Even in the same cancer - i.e. breast cancer - there are different subtypes.

Sometimes researchers try one treatment and discover not only did it help the cancer a they were studying, but it helps cancer b and cancer c and even cancer d. So we need to work together for all kinds of research - sometimes very, very specific types of research, and other times, wider research.

Sometimes congress tries to cut funding, so we need to join forces to write letters, make phone calls, rally people to also do that. We need to work together to make sure that funding is in place.

Sometimes, some organizations don't use the money in a good way. So we need to work together to make sure people know that is happening. To use our voices to encourage those organizations to do better.

All of us.
Not just one of us.
Or those that are in boat A, while ignoring those in boat B.

Not only that, but we need more than cancer patients and cancer survivors to join these ranks too - we need our families, our friends, our caregivers, our doctors, we need a lot of voices to join in with us so that we can be louder, stronger, heard.

But if those of us in the cancer community are bickering among ourselves, what will the people looking in see?

They won't see a group they want to join in. The won't see a cause they want to pick up and fight for. They will see infighting and complaining and brokeness and they won't want to be a part of it. Then those who are being downplayed, or made to feel less than will leave. They won't want to be a part of it either. And pretty soon, instead of coming together to work for a common cause, we will be left fractured, broken, and making smaller marks in this world.

This is not a legacy I want to be a part of.

This is not a competition I want to be a part of.

There aren't any gold medals for the person who has the worst.
There aren't any gold medals for doing cancer "right."
There aren't any gold medals for "being the best cancer patient."

The stakes, are infinitely higher than that.

If we won't, or can't, work together, we will continue to see really wonderful people die from cancer. We will not see science advance. We will not see some research happen.

People who have/had cancer will start to suffer from depression, anxiety, worry, pain, isolation, frustration alone. People who are already dealing with so much, will also spend time wondering why they can't do cancer right.

I do not want to be exclusive. I want to be as inclusive as possible. I want to talk about my cancer experience in an open and honest way, and I want you to have room to do that as well. I want us to work together, to raise our voices to fund research, push for better science, to help those that are struggling.

But ...
If you are going to turn cancer into a competition, I have to step away from that.
If you insist that how you do cancer is the right way, I have to step away from that.
If you are going to downplay an entire group of cancer patients as not as important because it's not your cancer, I have to step away from that.

So let's just not do that. Let's work together. Let's support each other. Let's acknowledge that at all stages, types, grades, subtypes - cancer just sucks. Period.

Because at the end of the day, cancer is cancer is cancer. If we can't all stand together regardless of type/stage/etc, how can we expect to find a way to get rid of it?

Sunday, January 24, 2016

Hanging on to Hope

Last week I posted this on my facebook page

Sometimes I reach a point where not only do I think I will eventually die of cancer, but basically all of us will. Unless we're hit by a bus or some other freak accident first.
Because lately I can't seem to go a day without reading about a cancer death - from someone in my circle or a celebrity. Or learning a friend/acquaintance has just learned they have terminal cancer or that treatment has stopped working.
And while my first thoughts are about that person, my second thoughts are much more selfish. And it's hurting my heart and my head so very much.
Someone else chimed in that he was feeling the same way, but feeling like a jerk for thinking of himself. Last night at a in-person meeting, someone else said it was hard for her to hear all this news too. 

It is comforting to know that I'm not the only person who hears the recent news and doesn't feel stung by it

I know I didn't know any of the celebrities we've lost recently personally, and yet, if even they couldn't manage a way to out-science cancer, how can I? How can any of us? 

Right now, it feels that every time I turn around, someone is dying. Of cancer. Famous people, non-famous people, men, women, parents, children. When does it end? 

How do I hear this news and hold onto hope? Hope that I'll be here in 5 years? Hope that I'll be here in 10 years? Or 15? Will I see my kids graduate high school? College? Will I see them get married? Have children? Will I someday be sitting at a family reunion, with my children, grandchildren, and great grandchildren?

In a few months I hit my 5 year cancerversary. 

5 years.

5 years is supposed to be a magical number. Just get to five years and you're good, right? 

At my last appointment, the oncologist and I talked about how 5 years isn't the magic number. There isn't really a magic number. But, he did say, if we can get to 10 years, the chance of recurrence drops off a lot. It doesn't disappear. 

My cancer could come back in 11 years. Or 21. Or even 30. 

Money won't make my cancer not return*. Fame won't make my cancer not return. Being rich or famous doesn't mean cancer can't kill you

There are times where I wish I could insulate myself from learning about anyone's death from cancer. Sometimes I think I need to stop talking to people with incurable cancer. Sometimes I think I need to not watch the news. Sometimes I think I need to just hibernate, pull into myself, and ignore the wider world around me. 

And yet, that's not the answer either. I have made some really beautiful friendships with people who are dying from cancer. It is hard to lose them, but I think my life would be less if I had never met them. 

It is hard to lose family members. And friends. 

And yet. I love knowing them. I love the relationships I build with people. I love them, even if I know that there might be a hole in my heart later because I'll have to say good bye to them. 

That's just from my perspective. Can you imagine having incurable cancer and then all your friends backing away because it would be too hard to be your friend? I can't even. And I don't want to be the person who does that. 

But it's still hard. It still hurts my heart. And it still hurts my head.         
 

Tuesday, January 19, 2016

Things You Should Know About

So I don't often share different events on my blog, but there are a few things I want to share with you.

First of, open sign-ups for Camp Kesem are taking place right now!

What is Camp Kesem? you ask. Well, I will tell you! Camp Kesem is a non-profit camp run through local colleges and universities for children who have a parent who had/have cancer.

What does that mean? you ask. Well, it means that Camp Kesem is run by very enthusiastic and wonderful college students. Kids who attend it, attend for free. It is at no cost to the family. There are locations all across the US. And it's a place where kids can go to have a lot of fun, but also to connect to other kids who know what it is like when mom and/or dad have cancer.

Let's face it, cancer is stressful on the whole family. And often times kids don't have a place to turn or none of their good friends have been in that situation so it can feel awkward to share. Cue Camp Kesem.

My kids have attended three years, and will be attending their fourth this summer. And we are SO happy we found it. If Camp Kesem isn't a fit for your family, feel free to share it with others who might need it!


Second, many places are having auditions for Listen To Your Mother (LTYM) right now!

This includes my sweet home of Chicago!

What is Listen To Your Mother? you ask. LTYM is a live stage show that takes place in 41 cities. It is people getting on stage and reading an essay that they've written about motherhood.

I was in Chicago's first Listen To Your Mother show and it was awesome. This year, I'm trying out. I'm nervous because I haven't tried since that first year. But whatever happens, I will be thrilled to see it back in Chicago.

In case you are wondering:
No, you don't have to be a mother. (You can write about your mother or mother figure in your life.)
No, you don't have to be a professional writer. (I was in the show, so that should clear that up!)
No, you don't have to be a blogger.
No, you don't have to be a public speaker.

All you have to do is have a story to share, put it to paper, and be willing to read it to an audience.

If you want to submit a piece for the Chicago show, it must be done by February 5. So get to writing. And if you don't want to be in the show, then mark your calendar for May 1 and go be a part of the audience supporting those on stage!

Side note: If you aren't in the Chicago area, go here to see if a LTYM show is coming near you. If you click on the city name, you should be able to get audition and show information! I'd like to round up all the info for you, but can't commit to that right now!

Third, Chicago is getting a new kids camp this summer: Galileo Innovation Camps. They look pretty fun, and the camps have been in other parts of the country before, but this will be their first summer in Chicago. You can head on over to my TheMakerMom's blog to get more info on it. I'm definitely thinking about putting Mister 10 in it. I think he'd have a blast!

Alright, I think that's about everything to share with you for the moment. Let me know if you sign kids up for camp, or are headed out to a LTYM show!

Sunday, January 17, 2016

Weight and Walking

steps from last week
For the last 4ish years, my weight has been climbing.

Albeit slowly, but steadily.

I know you're going to laugh. I've gained 8 pounds in 4 years.

Given that I'm on a SERM (selective estrogen receptor modulator - a fancy way of saying a pill that blocks my body from absorbing estrogen), only 8 pounds is something to celebrate. SERMs often cause women to gain weight, more than they would off of it and they make it harder to lose weight - even with exercise and diet.

So, only 8 pounds gained makes me quite lucky.

That said, I have a weight I'm not supposed to go over. The magic number is 130.

Apparently breast cancer recurrence is higher if your weight is higher. And so, my magic number is 130.

At my last check-up, I was 133.

I know. Big flipping deal, right?

Three little pounds.

I'm not worried about these three pounds. Honestly, I don't think three pounds will make or break me in the long term. I don't think there is cancer in my body that is floating around going "OH! OH! OH! She's over 130, time to grow and spread gang!" I don't think it works like that.

And yet, I feel like getting down to 130 shouldn't be terribly difficult.  
And yet, knocking off even three pounds isn't going to be easy.

I'm on medicine that wants my body to retain the weight.

[Here's where I take a moment to tell you that a few years ago some meme went around that said something like "I wish I could breast cancer because then I'd lose weight and get a free boob job." Hate to break it to you, breast cancer patients are much more likely to gain weight because of the meds we are put on. So not only is that completely offensive, it's not even how it works.]

steps from this week
Regardless, I've been kicking my butt into high gear lately. Well, I should say kicking into high gear for me.

I've started to walk. A lot.

I used to walk all the time, logging lots of steps each day. I managed to train three times for the Avon 2 Day Walk - and that's not a small commitment either.

So I decided to start walking more. Moving more.

It's not always easy. Often times I pace around the house because of various reasons that I can't leave my house. I've started running up and down the stairs at my house to use different muscles and get my heart rate up. I jog in place. I've been walking on the indoor track that my park district has at least once a week.

I sneak in extra steps where I can. Need to take two things up to the second floor? Then I take them up one at a time.  Earlier this week, I arrived at a meeting early. So I walked around the block twice.

I work hard each day to try to get a lot of steps in. Which is hard because if I'm walking I can't be reading (unless it's an audio book), I can't be working on my needlepoint, or crocheting. I can do simple knitting, but only if I'm at home - not at the track or out of the house.

Despite wanting to just sit, I keep going.

This is where I'm at. This is what I can do.

I can't run, I can't weight train, I can't train for a marathon. But I can walk.

So I walk.
And I walk.
And I walk.
And I walk some more.

It makes me both have more energy and also very tired. I think overall, when I'm awake, I'm more awake. But I am still hitting that energy wall hard and have noticed I've had an uptick in naps. I'm hoping if I just keep it up, that might get better. Or maybe it won't. It will be the price I pay to walk.

But today, today, that price feels worth it.

So I'm going to keep walking. I'm going to keep doing sets of stair climbs. I'm going to walk on the track, or at the mall. If it ever gets warm out, I'll walk outside. I'll continue to pace in the living room, to jog in place by the kitchen table, to walk in circles in the basement.

I'm going to do it for me.

And maybe those three pounds will come off.
And maybe they won't.

But at least I'll be moving.