Lack of grace?

I’m breaking all sorts of records today by posting twice in one day after such a long absence. Actually, have I ever posted two?

I’m spent the last hour reading articles that I won’t provide a link for because I don’t want to give them anymore attention than they already have and I’m too lazy. Granted it involves a NY Times writer and his wife so they probably don’t need me to send my 3 people over anyway.

Long story short, he and his wife both wrote articles criticizing Lisa Boncheck Adams for tweeting and blogging about her metastatic breast cancer. Google it. It’s everywhere. It showed up in 3 different articles on my Zite app this afternoon and caught my eye for obvious reasons.

There is a quote at the end of the NY Times article that suggested that people who choose to really “fight” cancer (God I hate war comparisons!) aren’t maybe handling it with as much grace and courage as those who accept the inevitable and just die already. I’m paraphrasing.

The author also compares Lisa, a young mom of 3, to his father-in-law who died quickly. Yes, the whole mom of 3 thing is probably what sent me over the edge.

Who the hell are they to tell us how to properly die. To me, going to “heroic measures” to be here for our children is what courage and grace are all about. I’m not on feeding tubes, they aren’t changing my diapers, I am not dependent upon them to care for me!

Instead, I am going to their band concerts, baking them birthday cakes and doing what I can to teach them all I can while I’m still here. Get that? While I’m still here! I will likely get to see my oldest graduate from high school.

I am on drug #6 and recently had surgery #4! These are the measures I go to for my children. Is it fun? No! As a matter of fact, most days suck. But I AM HERE! I am putting on the best face possible for them and I am doing this thing!

Does it require a boat load of courage to face each scan and pop the pills that I know will make me feel horrible? Why yes, I think it does! Would dying 8 years ago have been easier? Absolutely. For me. But not for them. The cancer patient gets the easy part. The ones left behind? Not so much.

It’s called parenting! Parenting despite what we’re going through on any given day. Parenting in a way that we hope will make them stronger, more courageous people who can handle life’s challenges with grace.

Which is exactly what I’m seeing in my girls and it reassures me that I’m facing this in the right way.

Do you get to judge me for my choices? Sure you do but only because I’ve put myself out there publicly. Will you be right? It’s doubtful.

Planning for an uncertain future

When your cancer has no cure but treatments make it manageable to a certain degree, it becomes a type of chronic condition that requires you to seek a balance in life. A balance between living with cancer and just living. The tricky part though is planning for that uncertain future.

I wonder why I’m writing all of this in a detached “you” form instead of first person. I suppose that’s better than a creepy 3rd person “Annie wonders how far into the future she can safely make plans”. Does anyone else hate it when people refer to themselves by name? Are we wondering why Annie is rambling instead of continuing on the thread started in the first paragraph? Avoidance maybe?

Let’s throw in some background to cover the last few months I haven’t written anything. The surgery in June was successful though I had many more tumors/lesions than had been on the April scan. Didn’t take long for the little bastards to settle in and invite A LOT of friends.  But they’re gone.

I then went through insurance hell trying to get the new drug. The low low price of $12,000/month may have been the sticking point, along with the head prescription coverage guy vacationing in Europe and denying my coverage from afar based on a wrong diagnosis. Yeah, they’re behind a few years. In the end though I got it and am still on it. As of mid November it seems to be working but I scan again this week to check things out. Given the growth rate earlier and the unknown new drug, we’re not giving it a chance to get ahead of us!

Being on a drug this new adds a whole new level of uncertainty to everything. Will it work for years or months? No one has been on it long enough to know. I’ve been on it since July – if it has a 6 month window, we’ve hit it. Am I able to tolerate a high enough level to make it work? Is it too similar to the last drug to last long given my resistance to that one? Or will this be the one to keep it under control for a decade? If it stops working, will there be another option that will work or will things progress quickly after this drug as it has for many? We can’t even guess.

Fast forward to last week when D1’s high school band was accepted into a wind ensemble festival in NYC in 2015. They will be playing at Carnegie Hall! This is one trip I REALLY want to champerone for various reasons. But it’s 14 months away. A lot can happen in 14 months. Will I be fresh out of surgery? Will I be cruising along on this same drug with side effects having become more tolerable? Or will my ashes have already been spread on my favorite mountain range?

This is what I do at night when other people sleep.

I do want you to know that I’ve already emailed people I’d like to see while we’re there as well as the band director to request chaperone duties before other parents take my spot. I AM planning to be there to watch my first born play in Carnegie Hall! Don’t get me wrong, I won’t thrown in the towel. I’ve made it 8 yrs next month. That’s not a small thing.

This week I also have a high school open house for D2 – my kiddo who was 5 when I was diagnosed. We are getting there and I will continue to do whatever needs to be done to assure I’m here to see more and more of their futures and mine.

If only I could shut up the voice of doom that has comes out to chat in the dark.

 

 

 

Limited Time

I’m not really sure I’m qualified to do a 9/11 post. I had left the east coast just under a year before it happened. But, it’s on my mind today along with everyone else.

I watched in shock with the rest of the world that day as I willed D3, who was due any minute, to stay put. To please wait to be born so that her birthday wouldn’t forever mark a day of such sadness. I mourned for the city I had grown to love and tried to reach the friend whose husband worked in one of the towers. I didn’t know which one but it didn’t matter. Thankfully, he had gone to the New Jersey office that day.

So many stories of the people who should have been there but weren’t, mixed with the stories of the people who shouldn’t have been but were. The ones who went in to rescue them and never came out. It is a seemingly unending list of those who died, mourned, prayed, survived.

Maybe this post is less about 9/11 and more about the frailty of human life.

Maybe it’s written under a cloud of drugs making me especially sick today.

I don’t really know. But my heart breaks for all those who witnessed such a horrible event and faced such life changing loss.

We so often take these beautiful fall days for granted. Hell, we take all of them for granted. That the beauty could be mixed with such horror was incomprehensible but it’s a part of that day, a reminder for anyone who watched.

I remember doing the NYC tourist thing early on and standing in awe below the towers. Being from a semi-small town I was also amazed at the number of people going in and out. That is what I remembered as I watched the news that day. The people. So many people.

There is an advantage to having cancer long-term. Though I sometimes take my additional time for granted, I occasionally get reminders of the gift I’ve been given in that I get to say good-bye to my family and friends when the time comes. Too many people have that right taken away. Today is that reminder for me again.

Today I will make an extra effort to make sure my family knows I love them. I don’t think they doubt it but they can never be told enough.

Even if you aren’t facing your mortality in quite such a direct way I think the reminder still applies.

Treasure the time you have.

Treasure the ones you love.

 

 

Then vs. Now

I’ve come to the conclusion that I really don’t know how to write about this actively growing cancer. When I created this page, I didn’t plan for it to be a “cancer blog” so much as stories about life. Part family, part life in general and of course part cancer because with quarterly scans, daily medication and suck-ish side effects, it really can’t be ignored.

That’s part of the problem of living with metastatic cancer. You’re never quite sure how to balance life before and life with cancer. Unfortunately, there is never life after because treatment never stops. I guess in this case, life after cancer is also known as the after-life.

But still, you find a way to keep it from the forefront because it doesn’t feel as threatening. It can be pushed back. You know it’s there but the treatment keeps it stable and in some ways, it can be ignored. Until recently, that’s where I was sort of able to keep it as I wrote about family things or baked goods or donut porn. Yes it always crept back in, because all of my life is viewed through a slightly cancerous lens, but I could make it stay there. At least when I was writing more frequently and had more on my mind.

And now?

Now it is actively growing and I find that it’s coloring everything I do or think. I spent the weekend out of town with family and I realized that every time someone mentioned a future plan, I finished the sentence in my head with “if I’m here”. I hate that I do that. I hate that I think about Mother’s day and wonder how many more I have. Very likely I’ll have many but the unknown is driving me crazy. It has since January when my scan came back with new growth.

I can feel my family watching me and I wonder if they’re thinking the same thing. My mom asked me to put my glasses back on because she doesn’t like the way my eyes look. Moms can always spot illness in their children’s eyes. SG studies me when he doesn’t think I’m looking. I don’t know if he’s wondering if I’m ever going to do anything with my crazy hair or how much more time we have.

I wonder if I should write with less honesty because I might go a little soft and tell my family about this blog someday but then I know that if I do, I will bring the cancer filter that exists in real life into this safe haven I’ve created for myself. This place where few of you actually know what I look like or care if I’ve gained a little weight.

By the way, the weight is only my surgery buffer because I know I will shed quite a bit afterwards. Kind of like people who gain weight before Survivor. Yeah, right.

So where does all this leave me and how do I write about it? How do I balance topics when the scales are tipped so heavily towards the big C? Do I go ahead and purge it all here and hope that I don’t scare you all away? Do I bite the bullet and fully embrace the title of “Cancer Blog”? Is that a limiting name?

I kind of don’t think so because there are so many of us out there and truly, the idea is to live with cancer in all it’s forms. It will still occasionally take a back seat to something stupid that I do or say because well, that happens a lot!

I saw a photo the other day on the Humans of New York Facebook page. It was a picture of a woman who had recently lost her husband. The caption was something along the lines of “I wish I had spent less time sad that he was dying and more time happy that he was still alive”.

I’m not dying, I’m simply dealing with the same old crap I’ve been facing the last 7 years. The only problem is I’ve never written during this phase. I’ll do my best to try to find the balance but please bear with me while I work things out.

Sometimes I think of adding another blog dealing strictly with issues of the chronically metastatic. With all of the wonderful drug development we are a growing bunch. That would be the one where I come clean – no anonymity. This disease needs a face. One that says, “Hey, you know that healthy looking mom sitting down at the class party? She has cancer, cut her some slack.”

Something to think about I guess.

Stupid Surgery

Alright, so here’s the thing. I feel like it’s time for a little honesty.

I’ve been trying to act all tough about this cancer and my upcoming surgery. I’ve tried to tell myself and anyone else who will listen that I’ve done it before, I’m a pro, it’s no big deal. But uh, it kind of is a huge deal and it’s freaking me out more than a little to know that I’m once again going in to be gutted.

Sure, I could say they’ll delicately open me up and debulk the tumors but really, when I wake up in recovery, it feels like “gutted” is the more accurate term.

I am ALWAYS a crabby pain in the ass in the recovery room. I wake up and I want more drugs, water, and my husband. Not necessarily in that order. I hate everyone around me and I hate the pain. It’s possible I might be a little bit of a baby.

When I met with the surgeon on Friday I acted all tough and nonchalant. He called me a veteran, asked me about prior surgeries, length of hospital stays etc. while his nurse openly gawked as I rattle off the lists of when, what and where. She really needs to work on her poker face. I tried to laugh it off and pretend I wasn’t terrified. Even my low blood pressure backed up my sense of calm.

I’m good at this. The sort of fake your way through conversations thing and act like nothing is wrong while inside it’s like I have this loose thread that is slowly being pulled until I unravel in a heap on the floor. But I never get there. At least not while anyone is looking.

Have I mentioned how much I REALLY REALLY hate surgery? I’d postpone it but the little bastards would probably kill me so I suppose it’s time to suck it up. I’m signing up to chaperone a field trip the day before. I think I’ll need the distraction.

Oh hell, at least those long cute loose dresses are in all the stores for summer. It’s amazing what you can hide under one of those. I have a feeling I’ll be hiding a lot!

Living Incrementally

I was given Valium for my PET scan last week and it was a wonderful thing! I was able to go to my results appointment that afternoon without the usual nervousness and anxiety. Unfortunately, it wore off and although the results have still left me a little numb, I am faced again with one hell of a challenge to overcome.

The attempt at giving the drug 4 more weeks to “kick in” was a colossal failure. Or maybe it wasn’t, I don’t know. Colossal is kind of a strong word. However, all the tumors grew a little and another new one decided to take root adjacent to my bladder. Perhaps the drug has slowed down the growth but still I’m not stable and they certainly haven’t shrunk.

So we face another new chapter. One which involves a consult with a surgeon on Friday. That scar from my sternum to my pubic bone is going to be reopened and I’m going to be stapled back together again. I’m still wishing someone would come up with a surgical zipper so that each time I go in it makes it just a little easier. The surgeries get more complicated each time because of the adhesions from the previous ones. In this case the THREE previous.

Everyone keeps asking how I’m doing and I’m not sure I really have an answer. Though there are moments when I feel I’m unraveling, I am really just numb. Most of the time. At others, I look out the window and see D2 working in the yard next to her dad and she seems so competent and it throws me a little. Inside though, I am so thankful that there are ways she no longer needs me.

I watch D1 go about her days and am in awe how grown up she is. She went to prom last month and that felt huge. Being here for that milestone was something I can’t quite describe so I won’t even try.

D3 is on a quest for as many cool hairstyles as she can find and suddenly they all require my help. She will be in the middle of homework and look up and ask me a question not homework related but about surgery or the next drug. I know that cancer is on her mind.

The problem is, we’re not sure what that next drug will be. I have an idea but it’s so similar to the one I was on previously that I don’t know how much faith I have in it. So I simply look ahead as far as the surgery, as this month I only looked towards the scan on the 25th.

Since January I have lived in bits and pieces. To the arrival of the new drug, to the follow-up scan, and then the PET scan and now surgery. I will spend May living one band concert, solo day and field trip at a time. I’m not sure I remember how to look very far ahead. I am suddenly a little afraid to hope.

My neighbor made a comment about me being pessimistic about my PET scan. She said it as if I was at fault for the results but I won’t accept the blame! I was realistic because I’ve learned what cancer feels like. I know the difference between a hot flash and night sweats from tumor growth. We all do.

Since January, SG has been finding places he needs me to take him right before lunch time. He takes the bus to work but seems to need me to run him around town more than usual. Each time the task is completed, he asks me if I’m in the mood to grab a little lunch. I’ve gained 12 pounds since that first scan when we found out Nexavar had stopped working. He’s ok with that – he says I need to gain a little weight before surgery. At this rate they won’t be able to find the tumors in all the extra lunches, but we are finding the time together where we can and that’s really all that matters.

I’m not at all sure what’s ahead. Last time a drug failed, two more drugs and two surgeries quickly followed. I’m not sure I’m as strong as I was 4 years ago but as I’ve said before, I’ll say ok to anything that keeps me here for my family. Though they seem to be needing me less, I know they’re not ready for me to leave.

So I won’t.

Guardian Angels

I have struggled for two days to write a post about Boston, based on my own experiences at the Portland Marathon the last 4 years, but it’s just not coming.

I’ve written, I’ve edited, I’ve saved and in the end, I’ve trashed them all. Nothing I can say can truly capture the spirit and the camaraderie of a marathon and the people who come to watch so I should probably give up.

I only know that when I’m there, I feed off the encouragement of everyone from the tiny little old lady with the sign on her back that says, “This is my 34th marathon, what’s yours?”, to the lean elite runners that you see headed towards the finish when you feel like you’re just getting started, to the very overweight woman at the back of the pack who is struggling but is cheered on by everyone she meets at a turnaround, fellow marathoners and spectators alike. The one who will finish the slowest but will be the most inspirational person for many who are watching her.

So many people and so many stories. Few of them are the lean runners you think of when you imagine marathon runners. They are every day people of every age, shape and size working towards a common goal.

I have felt the emotion and sense of victory at the finish when you’re carried to the end by the encouragement of the spectators. The people who gave up their day to come celebrate with their runners as well as every stranger who passes them on the course. The same people who make up the list of injured and dead because some non-human piece of shit decided they would be his targets on Monday. I can’t begin to describe the feeling of watching the explosions on Monday knowing how important that group of spectators and everyone along the race course for that matter, are to the finishers. And also seeing runners themselves, who likely have overcome so much to be there, injured after what was probably one of the biggest accomplishments of their lives.

My heart is broken and the marathon memory that keeps coming to mind for me is a man I walked behind 2 years ago. The back of his shirt was covered with photos of him and what I assumed was his wife. They were at various races and what looked like vacations together. In many of them she was wearing a Wonder Woman cape. In the center was a picture of her alone and this time, he was walking alone.

As I was passing him, an Elton John song came on my mp3 that I usually skip because it’s too slow but this time I kept it because it reminds me of my Science Guy and I needed him with me at that moment. It feels like a good song to honor all those guardian angels who, without regard for their own safety, ran in to the explosions on Monday to help. Bless them all.